Remodel for Carter

Robert Blackman is organizing this fundraiser.

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Carter was finally walking on his own at around 18 months, but he was always unsteady on his feet. Walking late wasn’t the only thing making us worry. He spiked really high fevers, had trouble swallowing, and came down with croup an awful lot. None of those are a big deal on their own, but combined with Carter’s developmental delays, they were concerning.

Carter’s pediatrician was concerned, too. For the next four years, there was much testing, possible diagnoses, copious amounts of worry, and a steady decline in ability. In 2015, doctors informed us he had H-ABC, a progressive condition that causes delayed, and eventually the loss, of motor function.

Over the next few years, Carter would go from walking to crawling, crawling to scooting, and scooting to barely able to keep his head upright on his own. The milestones he worked so hard for were gone. Everything changed.

Except Carter. The real Carter.

He's quite possibly the happiest boy in the world.

Carter’s charming and he knows it. He has a huge smile for everyone he meets, and they have a smile for him. Even when he’s in the hospital, fighting one critical illness after another, he strives to be positive, to reassure us he’s doing just fine. But the thing about rare diseases is, there’s no guarantee everything will be fine.

There are moments you just lose it. Every day is up and down, but when he smiles at us, we just know it’s going to be O.K., whatever it is. And if we're able to get him through his time on Earth and he’s happy, that’s all we want. So that's we try to do.

Opportunities to get Carter out of his wheelchair and really moving are rare. Carter's condition has progressed to the point that his lack of control and strength of his muscles, trunk and limbs limit even his ability to sit independently. One of the only times Carter really gets to move and really be free is when he is in a pool. He is able to float and remove the forces of gravity and the muscle tightness that hold him down. He can kick his legs and wave his arms. While he is in the water, he can stand, run, and truly play. He feels like he can fly.

Another reality of our situation is that Carter is still very much a growing boy. At the rate he is growing, he will soon be taller than his mom. And thanks to the excellent home blended foods made by his mother every day which he gets via his g-tube, he continues to put on weight. He weighs 80 lbs as of his last appointment. We generally carry Carter upstairs for toileting, bathing (Carter's shower and toilet are upstairs also) and bedtime, but this is getting more and more dangerous for us and him. We have considered a traditional seated stairway transportation device, but Carter's lack of upper body and neck control make this option impractical. This also would require two additional transfers as we moved him from his wheelchair downs stairs and to another chair once he gets upstairs.

We could move Carter to a room downstairs, but Carter is also very medically fragile. His feeding tube can become unplugged, or he can vomit, or he can gag on his own mucus or saliva and we need to be able to immediately respond. These things happen frequently. We actually already moved his room to be besides ours and had a doorway opened in the connecting wall so that we can observe him while he is sleeping.

Our hope is to build a small therapy pool and elevator for Carter. The small pool would ideally be enclosed in a room to allow for usage all year regardless of weather. This room would also include the elevator/ chair lift to get him upstairs. After consulting with architects and contractors, this total project will run at minimum of $90,000 to $120,000.

We are far from wealthy. Our move to California was due to a job opportunity, but the significantly higher cost of living in California plus the expenses of having two children with very expensive medical conditions (our daughter has Type 1 Diabetes) severely limits our ability to save. Our furniture is for the most part a mix of pieces we have had for 15+ years and used pieces from Goodwill. We sleep on a mattress purchased the year we were married over 20 years ago. We buy the majority of our "new" clothes at Goodwill as well. We haven't gone on a real vacation in almost ten years. Eating out is rare. We are not poor but we do have to live fairly frugally to cover all of our expenses and the reality is that funding a project like this will be next to impossible on our own.

We are asking for some help. Not to fully fund our dream of having a therapy pool that Carter can use year round, regardless of weather. Not to completely pay for an elevator that will allow us to continue to care for our son at home for as long as possible (while also protecting us and him from significant injury). But to at least make it possible. If we can even raise even 30%-50% of the cost, we will work to scratch together the remaining funds to make this dream a reality.

We thank you for even bothering to read to this point. If nothing else you have been given an opportunity to learn a little about a very special little boy and the family who loves him.