Medical Costs and Support for Arkell
Donation protected
Our son Arkell was diagnosed with Duchenne's Muscular Dystrophy (DMD) October 2018 when he was 4. As of now there is no cure and as the disease progresses it slowly robs a child's mobility and in most cases it proves fatal by their late teens into early adulthood. More and more cases of children living into their mid to upper 20s are being seen but one of the major factors seems to be how proactive and aggressive parents are with providing care and support. Arkell is a strong and happy kid and although he struggles at times he still loves to go on walks and go to the "bell tower" in Harper's Ferry and we want to do everything we can to ensure that he can do the things he loves for as long as possible.
Up until recently I was working pretty much non-stop with the mindset that working hard now would pay off later with being able to spend more time with the family. With Arkell's diagnoses it forced me to rethink that plan and I was fortunate to be able to find a job that allowed me more time home with Inga and the boys. However, this also had the side-effect of taking about a 22k/year pay cut. I still consider it the right move and have immensely enjoyed the extra time available but after having to pay 500 dollars for braces while also paying for doctor's visits travel etc. I came to realization that this is going to be a continuous and growing expense. Arkell is currently enrolled in a clinical trial at Kennedy Krieger which has offset most of the immediate expenses but as the trial comes to an end we will have to pick up these costs as well.
So at this point Arkell has received all the care he needs and we have not had to make a choice of one over the other. We're hoping to start preparing for the costs to come as well as have a reserve in the event we get access to a medication that isn't covered by our medical insurance.
If you have something to spare, we're humbly asking that you consider donating to help raise funds in support of Arkell's battle with Duchenne's and if you can't then my hope is that maybe awareness will spread and that will be a catalyst to finding a cure.
Up until recently I was working pretty much non-stop with the mindset that working hard now would pay off later with being able to spend more time with the family. With Arkell's diagnoses it forced me to rethink that plan and I was fortunate to be able to find a job that allowed me more time home with Inga and the boys. However, this also had the side-effect of taking about a 22k/year pay cut. I still consider it the right move and have immensely enjoyed the extra time available but after having to pay 500 dollars for braces while also paying for doctor's visits travel etc. I came to realization that this is going to be a continuous and growing expense. Arkell is currently enrolled in a clinical trial at Kennedy Krieger which has offset most of the immediate expenses but as the trial comes to an end we will have to pick up these costs as well.
So at this point Arkell has received all the care he needs and we have not had to make a choice of one over the other. We're hoping to start preparing for the costs to come as well as have a reserve in the event we get access to a medication that isn't covered by our medical insurance.
If you have something to spare, we're humbly asking that you consider donating to help raise funds in support of Arkell's battle with Duchenne's and if you can't then my hope is that maybe awareness will spread and that will be a catalyst to finding a cure.
Organizer
Jason Hawkins
Organizer
Ranson, WV