Welcome to Ford’s website. We have created this website in order to spread awareness of Spinal Muscular Atrophy, the disease Ford was diagnosed with at 4 months of age. We also wanted to give those of you who have been praying for our family and mostly Ford the opportunity to get updates on how he is doing and anything else we choose to share. We ask that you please take a moment to look at our “What is SMA” page and learn a little about this disease. We thank you for visiting our site and really enjoy your company!
Please also feel free to email us at email@example.com
I wanted to give an update on Ford as so many of our friends have been keeping him in their prayers. Ford has remained pretty healthy since he was diagnosed with SMA at 4 months old. He has been hospitalized 2 times in 5 years but other than that he doesn’t get regular colds or illnesses. He is a happy boy and loves a lot of things that five years old love.
A little over a month ago we started seeing signs that Ford was having trouble with something. It’s hard to know what is going on with Ford sometimes because he can’t tell us what is wrong. We didn’t know if he was maybe getting some teeth, something on his body hurt like a fracture or broken bones. We had to just start guessing. He was getting up at night crying for hours on end and nothing we did seemed to make him comfortable. We started troubleshooting and it seemed that there was something going on in his GI system.
Ford was getting a lot of gas trapped in his belly so we started trying to feed him through a 60cc syringe which was going to help him release the gas a little better. We were giving him gripe water and other gas meds to try and alleviate the discomfort but it didn’t seem like it was working. He was still waking up in the middle of the night but now he was pushing his food out of his belly and up the syringe. We started to see that he wasn’t digesting his food. Normally when we do respiratory treatments we vent Ford’s belly meaning any food that he may still have in his stomach comes out. This helps reduce the chance of aspirating anything into his lungs. We needed to find out what was going on in his belly so we started trying a couple different things.
We started out with his diet and took everything out of it except for what we call a basic mix and giving him only his juices and solids during the day. We were thinking that maybe his stomach was slowing down at night time. He seemed to still be having trouble so we then started giving him a basic mix for the whole day. We scheduled an appointment for him to get an x-ray of his belly to see if he maybe had some type of blockage but the x-ray came back normal. We also did a chest x-ray, sputum and stool cultures and all of those came back completely normal too.
We spoke with his specialist in Wisconsin and she has three ideas. She stated that a lot of times they anticipate SMA kids to develop GI problems with their low muscle tone. Ford was either suffering from food intolerance or maybe having bacterial overgrowth which we would need to see a GI specialist in order to find out. Since we had removed everything from his food we were on the right track to figuring out if something in his diet was bothering him. She also mentioned that he may need to be on a medication to help him with GI emptying. We met with his pediatrician because we cannot get into the specialist until March 22nd and she suggested that we start a medication for acid reflux.
Ford started on Zantac last Thursday and that was the first night that he slept for almost the whole night. We kept him on his basic diet to try and give his gut and belly a break and will add things back into his diet little by little. We have to add things back in slowly to test for anything that he may no longer tolerate. He seems to be doing so much better with the reflux medication and we did recently figure out that he may not be able to tolerate pear juice. We had added some back into his diet and he started having a higher heart rate and showed some signs of what was happening a couple weeks before. He didn’t have the best night so we emptied hi stomach and I made him a new mix in the middle of the night. After he started back on his mix he slept through the night. We will continue to add more things back in slowly to see if anything else bothers him.
We now are having a little trouble getting Ford to go with the bathroom himself. Most of the items we have in his diet are there to help him have BMs on his own, something that can be hard for our kids with low muscle tone to do. So we now ask that Ford will continue to improve and we will maybe know some more answers after we see the GI specialist. We also ask that you please pray that Ford will start having BMs on his own without assistance. We are doing good on his diet and may still need to make some changes but we are moving in the right direction.
Thank you again for all your prayers
A little late but here are Ford’s Valentine’s Day pictures
As we ring in the new year most people are thinking about their new years resolutions and goals that they hope to accomplish or succeed in during the year. Most of those goals include things like losing weight or becoming more healthy, getting a better job, buying a house, etc. All those things are great things and I know I will be working harder to be healthier but this year I really want to focus on my spiritual and emotional well being and relationships.
I want to wake up each day and commit to being joyful!! We live in a destructive world that focuses on the negative and it can really be devastating to your well-being. I think I may be a negative person, or at least someone who looks at the negative aspect before the positive more often than I’d like to admit. I try not to be this was and that is something I really need and want to improve on this year. My life can be very hectic and stressful. Do I let that stress take over my life or do I remember all the good in my day, all the good in my life? There is a lot of good!!
A lot of time I feel inadequate as a mother, wife, sister, and friend and I know that I can do better. I think that every person in the world has felt this way one time or another but it can be a hard pill to swallow. I can be mean and have a sharp tongue and some days a person that just can get my stuff together. I could blame it on a lot of things but the fact of the matter is this is my life and I need to take responsibility for my emotions and my actions to those emotions. I want to be a more joyful person and I know exactly where that joy needs to come from on a daily basis.
My relationship with Jesus. I have allowed myself to drift, to not talk to Jesus every day, to not spend time with him, to not be in his word. I can make all the excuses in the world about how my day is so busy taking care a special little boy and keeping up with all my house work but those are just that, excuses. What a forgiving and graceful God we serve that no matter how many times we mess up or drift away from him he will welcome us back with open arms.
I know that Jesus loves me even with all my short comings and boy am I thankful for that. So I guess this blog post is getting a little more personal than I had planned it to but at least this is a way for me to be more accountable to myself. I have said it here out load that I need to make Jesus a priority in my life. Not just a priority but my first priority. I want to commit to talking to him more every day. To spend time with him in his word and really seek him!!
I am going to wake up every day with the a decision to make, am I going to be joyful or negative? I hope that most day I can choose joy!! Here is to trying harder in the year to come to fully bettering myself.
This past spring we did a massive fundraiser to try and assist us in purchasing a new van for Ford. He is an only child but was quickly outgrowing his van. During that fundraiser we were able to raise enough money to get a new Ford Transit for Ford and in turn gifted our old van to another family. With our new Van we had some big plans and one of those things was to take our first family vacation to Florida.
We have been a couple places for a weekend getaway but we have never been able to go on an actual vacation. Scott’s main work season is during the spring to fall months when SMA families don’t have to fear as much from germs which leaves very little opportunity to get away for a longer period of time when the weather is nice and comfortable for Ford. Trying to travel in the winter isn’t ideal in PA but when we were given the chance to try and get away to FL we wanted to go. So we made sure we were extra careful to keep Ford healthy as last year during this time we were in the hospital. We really wanted to give Ford this experience.
Scott’s Aunt lives in Florida and she offered to let us come and stay at her house so we took her up on the offer to get away from the cold weather. Little did we know when we planned the trip that it was going to be 70 degrees in PA when we left!! It was nice though to not have to drive in the snow!!!! Packing for 10 days was a little intimidating as we have never been away for more than a weekend but I made lists and lists So we packed up the van and a trailer Scott got and started on our way!!!
The farthest we have ever driven with Ford is to Wisconsin to see his specialist, which is about a 10 hour drive (for us that turns into maybe 12-14 depending on stops) Florida was about an 18 hours drive minus the stops but we were not planning to stop at any hotels for the night. The amount of time it takes to unload all of Ford’s necessary equipment and supplies its just not worth it to us. So we sleep in the van and this is our set up.
This is where Ford travels when we go on a long trip. We have a 3 inch memory foam on top of this bench seat in the van. This seat can also lay flat which is nice as it allows him to be much more comfortable than traveling solely in his stroller.
This is where we have all of Ford’s equipment at an arms reach. When traveling we still have to do Ford’s daily treatments so this really helps. The picture below is where I sit. It also shows a control panel Scott installed so that we can run the inverter and all of Ford’s equipment on the go!!
This was our set up at night while we took a little break from driving to sleep
We left on Saturday early afternoon and we arrived in Florida on Monday afternoon. When we arrived the weather was gorgeous which we were super excited about because Scott’s Aunt Annie had told us that it has been raining a lot the last week. We didn’t have anything planned for the trip but relaxation and family time but we really wanted to enjoy the weather and scenery. The view from Annie’s patio is stunning.
Dozer got to meet a new friend, Crosby!!!
This first day we enjoyed sitting out on the patio taking in the view. We had dinner with Scott’s dad and Aunt and then called it an early night as we were tired from traveling. Here are some of the pictures I captured.
Over the next day we hung out on the patio and showed Ford all the cool trees and plants that were around. We watched the boats drive by and even tried to teach Dozer how to swim.
We also go to do some things with Ford that we have never done before. Ford got a fishing pole for his birthday so we thought we would take him fishing off the dock. Daddy and Ford practiced casting in the pool and then we went to the dock to fish. We didn’t’ catch anything but we did see three huge fish (which would have been too big to reel in with Ford’s pole) Scott grabbed a larger fishing pole in case any other big ones swam by but we had no luck. Maybe we will try that activity again once summer is here. One evening we also walked Ford through the neighborhood to look at everyone’s Christmas lights. We don’t live in a neighborhood so we usually drive around to see the lights. This is great as Ford was able to see everything up close.
Daddy teaching Ford how to cast his line
One day we decided to go to the large park that was just in town to walk around. There were playgrounds, tennis courts, pools, soccer and baseball fields. We walked through the park and enjoyed the trees and critters. We ran into a little squirrel that enjoyed playing with us.
We had a wonderful time and were able to have some down time to just enjoy each others company. We did decided to stay a couple more days then we planned and would have stayed even longer if we weren’t getting back two days before Christmas!!! Here are some more stunning pictures of the beauty in Florida.
We got home from our trip late Monday evening so we only had two days to get ourselves settled and ready for all our Christmas visitors. Good thing I had all our shopping and most of the wrapping done before we left. I only had to unpack, do laundry and grocery shop since my Mother in Law was so kind to have the house all cleaned.
On Christmas even we had some of Scott’s side of the family over during the day and again in the evening. I always enjoy the company of family. It was 70 degrees on Christmas Eve so we even enjoyed some time outside. We had great food, opened presents and shared stories and memories from the year!!
Ford’s Aunt Val and Uncle Rich
The rest of Scott’s Family, Aunt Jenn, Uncle Matt Grandma and cousins home from college
Then Christmas day we woke up and ate breakfast, opened our stockings and then opened up our presents with Scott’s mom and each other!! The rest of the day we spend relaxing and playing with some of Ford’s toys!
Then Saturday my family came to do Christmas with us!!! It was another great day with family and I was especially excited to spend some time with my brother and sister in law Bekah!!
We are so thankful that we got to get away and experience a family vacation. I am also so happy that we got through the holidays with Ford being healthy and just being able to be home and enjoy the holidays with our families. It’s incredible to make memories with Ford and we are so excited to see what 2016 brings us.
We hope all had a very Merry Christmas!!!
I can’t believe how behind I am on this blog and I hope that in the new year I can up with it a lot better as I love to share Ford’s life and his adventures. Something really cool happened not too long ago and something I never thought Ford would ever be able to do. This year Ford is participating in a preschool classroom that in our school district. We did this so that we could start building a relationship with the district and the administration so that they are familiar with Ford once he reaches “school age”. He is five years old but since he is a September baby he was not able to start Kindergarten this year and is doing another year of Preschool.
This year his teacher is Mrs. and she has done an amazing job of including Ford in everything. She sends me the lessons via email so that I can get an supplies needed so that Ford can do the same thing his class is doing from home. .He Facetimes with his class two times a week for the morning circle time and lesson. This year we have had the opportunity to use a Robot by Double Robotics instead of just the Ipad so that Ford can participate with his class from home. The Robot has allowed Ford to participate in activities that he may not be able to with just using the Ipad. When using the Ipad someone may have to hold it and move it around the room depending on the activity. When using the Robot I can control it and move it remotely from our home so that Ford can participate in a lot more in class.
This year Ford participated with his preschool class in his first school concert…the Bug Show!!! Ford dressed up like a Bee with some of his classmates and other dresses as butterflies and other bugs. They sang songs about bugs to their parents in the school cafeteria and Ford was able to be there via the robot. We are so grateful for technology and how it is opening doors for inclusion of all kids, especially a child like Ford who cannot physically attend school.
Here is a picture of Ford with his class.
Ford has had a pretty busy month so far with some great Fall activities and we just wanted to update you on how things have been going in our world. As many know we lost our beloved dog and best friend Moose in the middle of September. He was the best dog anyone could ask for and was so gentle around Ford. He protected him and loved him. It was hard loosing him and he will forever imprinted in our hearts. When you have a dog for so long and then they are gone everything seems weird. Moose was no longer here to greet us when we woke up or run to the door excited about going for a ride in the van. We missed him and still miss him terribly. At the end of the month we decided we would try and get a new puppy in hopes that it would aid in the healing process of loosing Moose. We searched the internet and found a family in Pittsburgh that had 6 pitbull puppies. We came home with this little guy and named him Dozer. He is a joy when he isn’t doing naughty puppy things and he loves to cuddle when he is in his calmer state of mind. Ford loves to cuddle with him and we are trying to take advantage as long as we can because Dozer won’t stay small forever.
Ok so onto the fall fun adventures. We took Ford to the local farmer’s market after his 5 year check up and he picked out 4 pumpkins to decorate the porch with and eventually carve as a family. On Mommy’s birthday we decided to take Ford to our friends Farm who runs a pumpkin patch and all together Family Fall Festival every weekend. Ford got to feed loads of animals including pigs, horses and goats. We looked at the Llamas and bunnies and we think Dozer made some new friends. too.
Mommy also took my Fall pictures. You know how she just loves to take my picture!!! Here I am looking as handsome as ever!
My mom also loves to be creative with my Halloween costume. This year we decided I was going to be an astronaut. How cool is that, a man who flies into space and lands on the moon is what Mommy was going to try and achieve, Daddy made me a DIY Astronaut helmet because my costume only came with a baseball hat and we all know that you can’t go to space without a space helmet. Here are how my Halloween pictures and costume turned out this year.
Last Saturday (Septmeber 19th) Ford turned 5 years old!!! Five, a whole hand, a number that we were told Ford would never see after he was diagnosed with SMA type 1. As you know if you have followed Ford’s blog, every year we like to have fun with his parties and make his birthday a big deal. Ford and I love taking pictures, silly pictures, dressing up in cute and funny outfits and I mean not just for Halloween. So we make Ford’s birthday parties themed and this year we did a Western Theme. Ford loves to look at the cows and horses on our road as we drive by and sometime there are even people who ride their horses in front of our house. Our families are just so fun and they always dress up and make the day amazing.
My parents let us borrow a backdrop that they used in their churches VBS a couple years ago and it was perfect for the party. This year I tried to be a little more fugal with Ford’s party expenses but still obviously make it a big deal. We were able to borrow a lot of items that were just perfect to make his birthday theme come to life. I took Ford’s birthday pictures a couple weeks before his party and he was just he cutest little cowboy ever.
This years party was so fun and able to be held under Ford’s new MAW project in the back yard. It rained around 6am and I was worried it would rain during the party so we started praying for it to hold off until the late afternoon. We set everything up under the pavilion and we had great weather!!
We didn’t have any entertainment like we did last year (we had a clown come perform) so we just decided to have all the guests do photos in front of the backdrop. Everyone came to the party dressed in their western gear and ready to get their picture with the birthday cowboy!!
We did a menu of Pulled Pork, baked beans, coleslaw and watermelon. Every guest went home with some Gold Nuggets (Homemade Caramel Corm) too. For dessert Ford had his very one cupcake and then all the guest were offered cow cake pops (made by his wonderful teacher, Miss Kim) and then gorgeous sugar cookies made by another SMA Mama’s business called Little Pterodactyl Cookie. (Look her up on Facebook because they were amazing)
We sang Ford Happy Birthday and we ended the party with opening of presents. Ford was the most chatty he has ever been during a party and I know our family loved hearing him just talk up a storm.
All in all it was a great day and a great party. Our family is so precious to us and we love that they make Ford’s celebration of life such a wonderful memory. Here are some extra candid pictures from Ford’s party. I can’t wait until next year!
Ford’s Make a Wish Project
Last July we had finally decided to go ahead and fill out the application for Ford to receive a wish from the Make a Wish Foundation. I was shocked at how fast we received a response from them after I filled out the application. They did the necessary work on their end and then told us that Make a Wish volunteers would be in contact with us soon.
We knew that Ford would love to have a wish that he could enjoy every day so we talked to him about the things that he likes and we came up with a garden in our back yard. Ford loves to be outside and he relishes in the sounds of the birds and surroundings of nature. He likes to watch the birds come to his feeders (we started out with homemade ones) and listen to them sing to each other. He also loves to watch the butterflies and especially his mommy running through the yard to catch them so he can get a closer look. He loves to go to the local flower nurseries and look at all the different kinds of flowers in many colors. There was a new garden nursery that opened up last summer and when we took Ford there to look around he was drawn to the water fountains so we knew that needed to be included.
Checking out the fountains
picking out flowers
homemade bird feeders
We received a call from the volunteers assigned to Ford’s wish and shortly after that we met with the Steve and Connie. They came out to the house with gifts in tow for Ford and we discussed our ideas and what Ford wanted for his wish. Ford is pretty vocal but he does not communicate as most other children and sometimes can be very stubborn when asked to communicate his wants. We as his parents however have learned what Ford enjoys and Connie and Steve knew that this was something Ford wanted and was going to love. They said that they would take our wish request back and would let us know if it was approved. We got a called from our local chapter Make a Wish saying they had never completed a wish like this but they were excited to make this happen for Ford.
We were so excited to start this journey and for Ford’s birthday last year everyone bought him things that could be placed in his garden. We had no idea of how long of a process our journey would be with Make a Wish. Our journey started pretty slow and it seemed like every time we spoke with our worker nothing had been accomplished since the last time we had spoke. I was pretty disappointed as things went on like this for a good couple months and then we were into winter. Since it was cold and the ground was freezing Ford’s wish has to be stalled until Spring came. Ford ended up being hospitalized this past winter and when we got home from the hospital we had been contacted by Make a Wish to see if things were ok with Ford. They ended up assigning us a new worker, her name was Leigh Ann and she was a miracle worker. She started getting the ball rolling and things we finally falling into place.
Facchiano Contracting came out and did the excavation of our back yard to prepare the ground for the concrete. The concrete was donated by Castle Builders Supplies of New Castle which we were so appreciative of them for doing. My hubby, Scott, his friend Ryan and some other friends and family members showed up to help lay the concrete when it was time. The Bridge was built by Always Vinyl located in Youngstown OH. The remainder of the project, all the construction and building of the pavilion and ramp out to the garden was done by our good friend Ryan Good from Good Construction.
The garden is absolutely breath taking and we have spent every day either wheeling in the garden or under the pavilion. I am glad that we decided to do the pavilion as is provides the much needed shade that Ford needs to hang outside. He loves sitting out in his garden reading books, blowing bubbles, watching his birds and most of all his water fountain. We still plan to get him a larger bed swing as Ford has outgrown the one Daddy built him. I know he will love swinging in his garden too.
Here is the final project!!!
I have always known that Ford was given to us by God for bigger things beyond our comprehension. His purpose is above ours and we want to allow him to guide us on this sometimes difficult journey. Having a child is not cheap and having a special needs child is even less cheap…lol!!! We knew that we were getting very close to needing a larger van but to be honest we just did not have the finances to even think about getting something bigger. Our Ford conversion van was amazing and I never thought we would ever need anything bigger, but boy was I wrong!! Ford is bigger, he is taller and he is almost 5 years old. Maybe something in the back of my mind thought we wouldn’t get this far (I don’t like to think those thoughts ever but in the darkest time they creep in) When we load up in the van it is hard to move around all the things that we have to bring with us. We knew Ford needed more room but we had no idea how we were going to make it work.
Then I remembered another SMA family that did something very big and God blessed them beyond what they imagined. I called Erica and I asked for her guidance in helping us create something big that would help us get Ford the van he needed. We talked on the phone and she shared all her secrets and then I prayed about it and decided that this was something we were going to do. I wanted to go even bigger as my mind wondered through idea after idea and I decided that if we raised enough money I wanted to give our current van to another family instead of selling it. I full heartedly believed that God was going to bless Ford and I knew that we needed to pay that blessing forward. I talked to Scott about it and he agreed that giving the van away was a great idea.
So I began talking to Ford about our idea to get him a new van and I reminded him as he is a miracle that miracles are possible. We launched our fundraiser in April called “Help our little man get a big van and Bless another family too”. Our goal was to raise $39,000 in 6 weeks by reaching 1000 people to give a donation of $39. We needed more than $39,000 to purchase the van however we were trusting the Lord would provide. So instead of selling our current van we decided if we reached our goal we wanted to gift Ford’s current van to another SMA family in need. There are always families looking for ways to raise money for a van and a handicapped accessible one at that. Our van already had a wheel chair lift, tie downs and a power inverter installed to run medical equipment so we knew that it would be great to give it to another SMA family.
We were so blessed through this fundraiser and we received checks and money from many people we didn’t know but felt led to bless Ford. We ended up extending our fundraiser by one week because we wanted to finish our efforts with a dinner but the end of our fundraiser landed on Mother’s Day. We ended up finishing our fund raising efforts with a Soup and Sandwich Dinner where we raised $5300 to bring our total to $33,415. We were not too far from our goal and there were still some people and schools who had planned to give after the end date. When the final total was given we had raised $39,938!!!!
I know the Ford is touching lives around the globe and that is the only way that this fundraiser was successful. God placed Ford on people hearts and minds and in turned blessed our family in an incredible way. We got our new Van in June and it is amazing. Scott needed to do a lot outfitting work to it in order for it to be accessible to Ford’s needs This is what the van looked like when we got it. We will share more pictures after Scott has completed the installation of everything Ford needs.
We humbly thank each and every person who helped make this miracle come true by praying with us, sharing our posts, passing out flyers and envelops. Attending our dinner and most importantly giving. God has blessed us so that we may bless another. We couldn’t decide how we wanted to go about giving our van away and then a family was placed on our heart and we prayed about it as we had not connected with this SMA family yet. We were told they have an almost 4 year old daughter named Jazarria who has SMA type 1 just like Ford. They were in need of a van as they were not able to get out together as a family and were having to take Jazzy to her medical appointments via an ambulance service. They have tried in the past to fund raise for a van but we all know that it can become a very long journey. We were blessed to be able to raise the money we needed pretty quick so we wanted to ease the stress of this family and bless them with our old van. That only become possible through all the help we received from so many and we thank you for making that possible. This family was in the running for a van during mobility awareness month but ended up not being picked which I knew as a sign from God that we had made the right choice by picking the Winston family.
Last picture with the van
When I contacted Patina to tell her that we wanted to gift our van to them as we had just done a fundraiser to get a new one she was in complete shock. She shared with me how they have struggled over the past couple years to get a handicap van and this was going to be a huge blessing to their family. This is what she shared with me (she gave me permission to share)
“Jazarria is an SMA type 1 and was diagnosed @ 6 months. By the time she turned 2 we started trying to raise money for a wheelchair accessible van. It has been a struggle because there are no services where we live to take Jazzy to out of state appointments. So we struggled to get her to her appointments in Cincinnati to see the SMA specialist. All of Jazzy’s in state appointments we used the ambulance service because of how much equipment has to be used with batteries and we have no proper way to strap her down. It has always been my desire for us to just go out and about like any other family can. It has been a challenge because of the size of our family. Where we live there are always people scamming so when we decided to do a fundraiser the response we received back was of people attacking us who did not know Jazarria or understand her diagnosis. We were told she did not need a wheelchair accessible van. So I backed off of fundraising because I felt overwhelmed with judgment. I just prayed and asked God to please provide us with this much needed transportation that would enrich Jazarria’s life and put our minds at peace. We had entered into a van contest that we did not win but towards the last week of the contest you contacted me and explained to me how God incredibly blessed you to have a new van through donations and that you wanted to gift us your old van. When I read this I screamed thank you Jesus and begin to cry because it was a prayer answered. We just did not have the money to buy one and I just couldn’t take the slander of being told I was exaggerating about my child’s disease and needs. You blessing us with this van came right on time and was so unexpected yet so needed. It allows me to bring my family together and to get out and enjoy family outings and quality time. It allows us to entertain the idea of out of town trips or vacations something we just continued to believe God for in spite of the obstacles. We are so very grateful that you all allowed God to use you as a vessel in making our little girls life more enjoyable. There are not enough words to express the gratefulness we feel and the amazement of it all.”
Scott met the Winstons to give them the van this past Saturday. We are hoping they will now be able to get out together as a family and enjoy many adventures together. Making memories is so important and we are excited they will now get to give Jazzy so many experiences with her sisters too. Jazzy can get to all of her appointment comfortably now in her very own van and hopefully back to see her specialist in Cincinnati Ohio.
May the Lord continue to bless your family and keep Jazzy healthy. We again are so thankful to all who made this possible. It was not done through us but through a community of believers who believed it could be. Thank you, thank you, thank you!!!!
Be on the lookout for updated pictures of Ford’s new van and many posts on adventures to come this summer!!!
This past Saturday evening our SMA community was completely devastated to learn of the passing of Gwendolyn Strong. I myself was completely heartbroken and I simply just couldn’t hold my composure. I am sure the SMA community was all the same. I cried almost the whole evening and I have never even met Miss G (that’s what a lot of SMA families call Gwendolyn) in person. SMA is such an ugly disease and it rips families apart so unfairly. It takes children from this earth far too soon and leave parents with a whole in their hearts. This loss was a loss not only to the Strong family but to the whole SMA community and to all those who’s lives Gwendolyn and her family have touched over the years.
SMA is ugly, devastating, life shattering, and dark however it has also brought a whole new family into our lives over the past 5 years. Living through the SMA journey can also bring love and support like no other. It’s strange how you can never have met someone yet you feel like you know them, they become family….they are your family….your SMA family. You share stories and pictures and you begin to have a glimpse into the lives of these kids who; just simply stated steal your heart. These families understand this journey and there is an undeniable bond between SMA families. They help you get through the worst and they celebrate your kids’ accomplishments however big or small with joy. So when you find out about another child in your “family” losing their battle your heart breaks a little bit more and they take a piece of it with them.
When we started this journey the GSF was just launching their new slogan “Never Give Up” and I can’t imagine a better family to emulate that attitude. I remember reading their story in the Families of SMA compass, they talked about how they had been so nervous to take Gwendolyn places out of fear and then one day they decided that they needed to allow Gwendolyn to live. This may look different for each family depending on circumstances and the child but they inspire people to live each moment and each day to the fullest. They gave Gwendolyn the lead in her life and she showed everyone that SMA did not define her, she lived beyond the diagnosis of SMA. Victoria and Bill allowed Gwendolyn to chose what she wanted her life to look like and what would make her happy. They shared Gwendolyn with the world and we all fell in love with her. This family along with Gwendolyn truly encompass the “Never Give Up” attitude. I loved reading the GSF blog about all the adventures Gwendolyn experienced in this life. Gwendolyn was a light in the SMA community who lived a fearless life and gave many families the courage to live beyond what some define living with SMA should look like. In every picture Gwendolyn’s mom and dad posted of her you could see the world in her eyes She loved living this life.
The Strong family have been an inspiration and have led this community with courage and bravery. Their commitment to supporting other families though advice and experience has helped enrich the lives of so many on this journey. This family has also been so dedicated in guiding support to many research avenues all the while taking such excellent care of Gwendolyn and it is just beyond amazing.
To say our community is devastated that Gwendolyn is no longer here would be an understatement but I know we do rejoice together knowing that she is now living SMA free. As a community we will grieve together along side Victoria, Bill and Eleanora and remember the light in Gwendolyn’s spirit and the twinkle in her eyes. We will remember her courage and adventurous nature. She has left the community with a legacy that will never be forgotten. Victoria and Bill, we pray that you will feel the arms of our community around you during this time and know that your daughter has touched more lives than you know. Thank you for sharing Gwendolyn with us and I know she will be visiting many of our kids to continue to give them the courage they need through this journey.
I ask that you please continue to keep the Strong family in your thoughts and prayers.