Living with an illness can be truly difficult. Put yourself in the Oxley family’s shoes for a moment. Jacob and Christie’s children, Addie and Micah, have been battling with SMA (Spinal Muscular Atrophy). With a new treatment available in America, the Oxley family are about to embark on a long journey moving country to get the help that’s not available in Australia.
Tell us about your family.
Jacob and I (Christie) have been married for almost nine years and have been blessed with three amazing children in this time. Eloise, who is 8, Adeline (Addie) who is 5 and Micah who is almost 3. Jacob has been a local of Armidale his whole life, and I moved to the area in 2000 in order to attend the University of New England. We have been living in Uralla for over five years now. Our two youngest children, Addie and Micah, have both been diagnosed with SMA (Spinal Muscular Atrophy).
Addie reached all milestones and progressed normally until it came to the age where she started to “walk”. It was at this stage we started to notice she didn’t develop as her sister had. We could tell she was significantly weaker, and her legs and walking didn’t look right to us. Just before Addie’s second birthday, we got her official diagnosis of SMA (a strong type 2). At the time of Addie’s diagnosis, I was around 20 weeks pregnant with our third child, whom we had recently found out was a boy. We waited until after his birth to get him tested, and unfortunately his test came back that he did in fact have SMA as well. Thankfully he progressed normally, as Addie had, and was in fact even stronger than his sister and has been given the diagnosis of SMA type 3.
For those who are unaware of what SMA (Spinal Muscular Atrophy) is, tell the readers how it affects the body.
SMA is a genetic, degenerative neuromuscular disease that affects all voluntary muscle groups. Due to a loss of the SMN1 gene, people with SMA do not produce enough survival motor neuron (SMN) protein, which is critical for the maintenance of motor neurons. SMA is classified into types 1 to 4 based on the physical milestones achieved and the age at which symptoms present. Type 1 SMA is the most severe life-threatening form, with individuals diagnosed having a lifespan of approximately two years. Individuals diagnosed with SMA types 2 and 3 have less severe, but still life-altering consequences. The progressive muscle weakness and muscle wasting (atrophy) not only affects the muscles necessary for crawling, walking, sitting up and head control, but will eventually affect the ability to speak, eat and breathe independently.
Tell us about what you are planning to do.
On the 23rd December 2016, the US Food and Drug Administration (FDA) approved the first ever treatment for SMA. Jacob is a dual citizen, so this was very exciting news for us, and we both immediately thought we should relocate to America to seek this treatment. While this drug has the opportunity to be approved by the Therapeutic Goods Administration (TGA) here in Australia, unfortunately this is a process that will likely take two years. This timeframe would see significant progression of the disease in both children as they grow, and the trials have shown that the earlier the treatment is received, the greater impact it has. Jacob has the intention of relocating as soon as possible to obtain employment and start to set up, which will enable the children to gain US citizenship.
Tell the readers about how it will benefit your children.
This treatment has the potential to significantly impact Addie and Micah’s physical abilities. Trials of this drug have shown some amazing results, with patients reaching milestones that without treatment were beyond them reaching. We have the hope that Addie will maintain her ability to stand on her own (which she is losing rapidly) and that she will increase enough in strength to regain some of her ability to walk. Micah is still able to walk independently in some situations, but is slowly losing this ability with the increase in muscle wasting, so treatment will likely maintain his ability to walk. As exciting as these gains are to us, it is also important to note that the drug will stop further progression of the disease.
How much does treatment like this cost?
The drug company has set the wholesale price of the drug at $125,000 per injection. With both Addie and Micah needing one every two weeks for the first three, then another one month later and then one every four months for the foreseeable future, this equates to $750,000 per child for the first year and $375,000 per child each year thereafter. America’s healthcare system is unlike ours here in Australia, but there are several options as payment for treatment, with the most likely option being through their health insurance system.
Then there are also the additional costs of relocation. The cost to travel over initially, to set up accommodation, obtain transport and cover the living expenses while setting up over there.
How could anyone ever pay for this?
While Jacob and I both work and are planning to work while we are residing in America, the costs involved in this endeavor are beyond our reach. Since getting Addie’s and Micah’s diagnosis we have had to modify our home to accommodate their disability and buy a wheelchair van to transport the kids, both of which have been an extremely costly tasks. Unfortunately, because of these costs we have little money to relocate to America, let alone the ability to afford any out of pocket expenses for the treatment itself.
If our readers want to help out, what avenues can they go through?
We have started a gofundme page called “Treatment for SMA”. The online address is https://www.gofundme.com/treatment-for-sma. We also have a couple of fundraising events in the pipeline to help with the huge costs that we will be facing. So if any readers have the ability to donate or even share our page, we would be extremely grateful.