William’s Medical Fund
Donation protected
Will has been a fighter since the beginning. I was put on bed rest for my first trimester because I bled for three weeks and almost lost him. He came into the world simply and started out in what seemed to be a normal life. He was so joyful and happy from the get go. Interested in everyone around him. He has always had such a sweet disposition and loves to smile and be around people. His favorite person by far is his older brother James. They are 21 months apart and have the greatest bond. Will always has to be around James otherwise separation anxiety sets in! Through our health journey with Will, James has become his little protector and always needs to sit next to him at every doctors appointment or test. He even sat next to him as he cried while getting his first blood draw. Will looks for James as he tries new and scary things in therapy only to be met with “Go Willie!” Cheers from his older brother. They are the best.
When William was 3 months old we started noticing he was not developing at the same rate his older brother James had. By our 6 month well check he was very far behind. He hated tummy time and refused to use his legs. We were sent to a neurosurgeon because his head had been growing at an extremely quick rate. We found out he has a form of hydrocephelus - excess fluid in or right outside the brain. Luckily for Will, his is right outside his brain and should drain by the time he turns two. Taylor and I were hoping the excess fluid was somehow causing pressure in his head and that was what causes his legs not to function properly, unfortunately that was not the case.
The next ten months have been spent going from one specialist to the next - neurosurgery, neurology, cardiology, allergists, geneticist, urology and metabolic syndromes. All of our doctors have been on a hunt to find the cause of Will’s lack of mobility. We do know he has hypotonia, a lack of muscle tone, which has made all kinds of movement very difficult since he has very little strength built in his limbs and core but still, not the answer to him not being able to bear weight and use his legs as they are intended.
Through the last ten months we may not have any answers as to why this is happening but we do know his brain is fully intact, his spine is great, skeletal structure is great, heart is perfect and he (so far) so no genetic abnormalities.
Three months ago, when Will was 11 months old, we landed at the metabolic department at our local Children’s Hospital. We have been doing extensive tests to find a link to why he can’t use his legs. During this time we got an MRI. The MRI was looking for abnormalities in the spine but also gets clear imaging of internal organs. This was when we found out Will’s left kidney was double the size of his right. He has Hydro Nephrosis in his left kidney. Basically his kidney has a massive obstruction that needs to be removed so the kidney can fully release all the pee (and all the toxins it’s holding) through the ureter to the bladder.
We are unbelievably happy to have found this problem with his kidney. Currently this new health issue seems to be a detour on our road to answers about Will’s leg function. Scientifically speaking Hydro Nephrosis does not cause someone’s legs to not work properly. Taylor and I are very hopeful that he will be happier and obviously healthier after his surgery, on December 31st, and this will help him heal whether that means he begins to use his legs soon after or we keep walking this road with his metabolic doctors. We need this surgery to be behind us before we can do more testing.
Our next big step is a full genetic panel. This would be taking both Taylor and I’s DNA and comparing it against Williams. This would be looking for rare disease and syndromes.
This whole journey has been very daunting and confusing. Ultimately we chose to move forward to search for answers and not let the debt we’re incurring stop us. We are so glad we did because we would have found out too late for his left kidney if we would have stopped.
Thank you for being on this journey with us and investing into Will’ future mobility!
When William was 3 months old we started noticing he was not developing at the same rate his older brother James had. By our 6 month well check he was very far behind. He hated tummy time and refused to use his legs. We were sent to a neurosurgeon because his head had been growing at an extremely quick rate. We found out he has a form of hydrocephelus - excess fluid in or right outside the brain. Luckily for Will, his is right outside his brain and should drain by the time he turns two. Taylor and I were hoping the excess fluid was somehow causing pressure in his head and that was what causes his legs not to function properly, unfortunately that was not the case.
The next ten months have been spent going from one specialist to the next - neurosurgery, neurology, cardiology, allergists, geneticist, urology and metabolic syndromes. All of our doctors have been on a hunt to find the cause of Will’s lack of mobility. We do know he has hypotonia, a lack of muscle tone, which has made all kinds of movement very difficult since he has very little strength built in his limbs and core but still, not the answer to him not being able to bear weight and use his legs as they are intended.
Through the last ten months we may not have any answers as to why this is happening but we do know his brain is fully intact, his spine is great, skeletal structure is great, heart is perfect and he (so far) so no genetic abnormalities.
Three months ago, when Will was 11 months old, we landed at the metabolic department at our local Children’s Hospital. We have been doing extensive tests to find a link to why he can’t use his legs. During this time we got an MRI. The MRI was looking for abnormalities in the spine but also gets clear imaging of internal organs. This was when we found out Will’s left kidney was double the size of his right. He has Hydro Nephrosis in his left kidney. Basically his kidney has a massive obstruction that needs to be removed so the kidney can fully release all the pee (and all the toxins it’s holding) through the ureter to the bladder.
We are unbelievably happy to have found this problem with his kidney. Currently this new health issue seems to be a detour on our road to answers about Will’s leg function. Scientifically speaking Hydro Nephrosis does not cause someone’s legs to not work properly. Taylor and I are very hopeful that he will be happier and obviously healthier after his surgery, on December 31st, and this will help him heal whether that means he begins to use his legs soon after or we keep walking this road with his metabolic doctors. We need this surgery to be behind us before we can do more testing.
Our next big step is a full genetic panel. This would be taking both Taylor and I’s DNA and comparing it against Williams. This would be looking for rare disease and syndromes.
This whole journey has been very daunting and confusing. Ultimately we chose to move forward to search for answers and not let the debt we’re incurring stop us. We are so glad we did because we would have found out too late for his left kidney if we would have stopped.
Thank you for being on this journey with us and investing into Will’ future mobility!
Organizer
Laura Stevenson
Organizer
Santa Ana, CA