Wesley's Medical Expenses
Donation protected
Emily and Troy have two children who are facing significant challenges. First was Alexis who was diagnosed with JIA at the age of two and a half. In later years she was also diagnosed with IgA Deficiency.
Then when Alexis was four, they had their second child Wesley. At an Emergency room visit when Wesley was 6 months old, the doctors asked if they could bring Wesley back for an appointment with a pediatrician. The doctors were concerned that Wesley was failing to thrive.
Dr. Bellmare, a pediatrician at the IWK at that time, saw Wesley two days later. At that appointment he suggested a short stay in the hospital to run tests. Mom and Wesley spent two days at the IWK undergoing tests and having visits from neurology doctors. The doctors ran their tests and advised Mom and Dad that Wesley may have Duchenne Muscular Dystrophy (DMD). The next step was to have genetic testing to confirm the diagnosis.
At 7 months old, Wesley's genetic testing was complete and their worst nightmare was confirmed. Wesley had DMD. He started a treatment of Deflazacort at the age of 1 to help his body cope with DMD.
For those of you who do not know what DMD is:
Duchenne muscular dystrophy (DMD) is an X-linked recessive form of muscular dystrophy, affecting around 1 in 3,600 boys, which results in muscle degeneration and premature death. The disorder is caused by a mutation in the gene dystrophin, located on the human X chromosome, which codes for the protein dystrophin.
At the age of two, Wesley was still not speaking. Back to the hospital they went for testing and Wesley was diagnosed with high functioning Autism Spectrum Disorder (ASD). With these two diagnoses, their lives changed forever: extra care, frequent visits to doctors and hospitals, and a realization that Wesley’s life was going to be cut short by Duchenne Muscular Dystrophy. But through commitment, taking extra hours at work and help from family and friends, their lives were somewhat manageable.
In December 2015, the family suffered a setback; both Mom and Dad were working for the same company and were laid off.
In the spring of 2016, Alexis came out to Mom and Dad that she was transgender. This has been a big adjustment for their family and they are very supportive of Rick, his new chosen name.
One day in July of 2016, Wesley, now 10 years old, woke up and was not able to walk or stand. They took him to the Emergency room where they x-rayed his left foot. The doctors showed them the x-ray and advised that Wesley had 3 bones in his foot that had totally disintegrated. Mom and Dad were devastated! They knew that lower bone density could be a side effect of the Deflazacort but never thought that this could happen. Mom and Dad were told that an appointment would be made with an orthopaedic surgeon.
At the first appointment with the surgeon he told them that yes, 3 bones were gone and there was a hairline fracture on the other side of the same foot. In time the fracture would heal and the missing bones were not a big deal. They were relieved and booked a follow up appointment for four weeks later to ensure the fracture was healing properly.
At the follow up appointment, the doctor requested an x-ray of both feet. This revealed that his right foot had the same thing happening. Osteonecrosis (disintegrating bones) are seen all the time but not to this extent. The doctors are stumped and they have ordered an appointment to have a bone scan and CT scan completed so they can get a better picture of what is going on.
Wesley has started an infusion of bisphosphonates which is delivered by IV at the hospital every two months for 4 hours at a time. He is a trooper and made it through his first treatment with no side effects. This is to try and help with the pain that he endures when he does try to stand and it seems to have helped some. Unfortunately he will not even try to walk.
After having gone through getting the kids diagnosed, going through a rough time being laid off just before Christmas, dealing with a claim with the Labour Board for lost wages and unpaid expenses, coping with the transition for Alexis to Rick and dealing with the decline in Wesley’s mobility, this family has pushed through it all and continues to do so with great determination.
They knew the day would come when Wesley would not be able to walk anymore but it has come sooner than expected. Wesley is now in desperate need of medical equipment and home adaptations. These include a power chair, an exterior vertical lift, floating rail systems, a roll-in shower, a new deck and patio door, a vehicle that has a ramp or lift installed and other minor items.
The parents have also not been able to look for full time work since July when Wesley stopped walking, as there have been many doctor appointments as well as the need for someone to be with Wesley 24/7 until they can get all of the equipment they need for Wesley to have his independence back.
They have started their own small Property Management Company but right now the expenses outweigh the income. They are hopeful that it will grow enough so they can make ends meet as Wesley will become less independent as the years go by and doctor appointments/hospital stays will increase.
The family has applied for funding through different programs and are pounding the pavement to find as many donors as possible. The vertical lift and adaptations to accommodate the lift alone are over $20,000.00 and is first priority as their only option to get him in and out of the house at the moment is to carry him. The second priority is a vehicle with a ramp or lift; and the list goes on from there.
All funds raised will go towards making a better life for Wesley. He is a wonderful child full of love, happiness and innocence. His life will be short and this family want to make it the best that he can have.
Mom and Dad understand that times are tough for everyone but every donation, no matter what amount, will contribute to making the dream of a little more independence for Wesley a reality!
Thank you for your support and please share with everyone you know.
Then when Alexis was four, they had their second child Wesley. At an Emergency room visit when Wesley was 6 months old, the doctors asked if they could bring Wesley back for an appointment with a pediatrician. The doctors were concerned that Wesley was failing to thrive.
Dr. Bellmare, a pediatrician at the IWK at that time, saw Wesley two days later. At that appointment he suggested a short stay in the hospital to run tests. Mom and Wesley spent two days at the IWK undergoing tests and having visits from neurology doctors. The doctors ran their tests and advised Mom and Dad that Wesley may have Duchenne Muscular Dystrophy (DMD). The next step was to have genetic testing to confirm the diagnosis.
At 7 months old, Wesley's genetic testing was complete and their worst nightmare was confirmed. Wesley had DMD. He started a treatment of Deflazacort at the age of 1 to help his body cope with DMD.
For those of you who do not know what DMD is:
Duchenne muscular dystrophy (DMD) is an X-linked recessive form of muscular dystrophy, affecting around 1 in 3,600 boys, which results in muscle degeneration and premature death. The disorder is caused by a mutation in the gene dystrophin, located on the human X chromosome, which codes for the protein dystrophin.
At the age of two, Wesley was still not speaking. Back to the hospital they went for testing and Wesley was diagnosed with high functioning Autism Spectrum Disorder (ASD). With these two diagnoses, their lives changed forever: extra care, frequent visits to doctors and hospitals, and a realization that Wesley’s life was going to be cut short by Duchenne Muscular Dystrophy. But through commitment, taking extra hours at work and help from family and friends, their lives were somewhat manageable.
In December 2015, the family suffered a setback; both Mom and Dad were working for the same company and were laid off.
In the spring of 2016, Alexis came out to Mom and Dad that she was transgender. This has been a big adjustment for their family and they are very supportive of Rick, his new chosen name.
One day in July of 2016, Wesley, now 10 years old, woke up and was not able to walk or stand. They took him to the Emergency room where they x-rayed his left foot. The doctors showed them the x-ray and advised that Wesley had 3 bones in his foot that had totally disintegrated. Mom and Dad were devastated! They knew that lower bone density could be a side effect of the Deflazacort but never thought that this could happen. Mom and Dad were told that an appointment would be made with an orthopaedic surgeon.
At the first appointment with the surgeon he told them that yes, 3 bones were gone and there was a hairline fracture on the other side of the same foot. In time the fracture would heal and the missing bones were not a big deal. They were relieved and booked a follow up appointment for four weeks later to ensure the fracture was healing properly.
At the follow up appointment, the doctor requested an x-ray of both feet. This revealed that his right foot had the same thing happening. Osteonecrosis (disintegrating bones) are seen all the time but not to this extent. The doctors are stumped and they have ordered an appointment to have a bone scan and CT scan completed so they can get a better picture of what is going on.
Wesley has started an infusion of bisphosphonates which is delivered by IV at the hospital every two months for 4 hours at a time. He is a trooper and made it through his first treatment with no side effects. This is to try and help with the pain that he endures when he does try to stand and it seems to have helped some. Unfortunately he will not even try to walk.
After having gone through getting the kids diagnosed, going through a rough time being laid off just before Christmas, dealing with a claim with the Labour Board for lost wages and unpaid expenses, coping with the transition for Alexis to Rick and dealing with the decline in Wesley’s mobility, this family has pushed through it all and continues to do so with great determination.
They knew the day would come when Wesley would not be able to walk anymore but it has come sooner than expected. Wesley is now in desperate need of medical equipment and home adaptations. These include a power chair, an exterior vertical lift, floating rail systems, a roll-in shower, a new deck and patio door, a vehicle that has a ramp or lift installed and other minor items.
The parents have also not been able to look for full time work since July when Wesley stopped walking, as there have been many doctor appointments as well as the need for someone to be with Wesley 24/7 until they can get all of the equipment they need for Wesley to have his independence back.
They have started their own small Property Management Company but right now the expenses outweigh the income. They are hopeful that it will grow enough so they can make ends meet as Wesley will become less independent as the years go by and doctor appointments/hospital stays will increase.
The family has applied for funding through different programs and are pounding the pavement to find as many donors as possible. The vertical lift and adaptations to accommodate the lift alone are over $20,000.00 and is first priority as their only option to get him in and out of the house at the moment is to carry him. The second priority is a vehicle with a ramp or lift; and the list goes on from there.
All funds raised will go towards making a better life for Wesley. He is a wonderful child full of love, happiness and innocence. His life will be short and this family want to make it the best that he can have.
Mom and Dad understand that times are tough for everyone but every donation, no matter what amount, will contribute to making the dream of a little more independence for Wesley a reality!
Thank you for your support and please share with everyone you know.
Organizer
Emily Dodsworth
Organizer
Lower Sackville, NS
