I would first like to start by saying thank you to everyone who has reached out, called, wrote letters, visited, donated; we couldn't thank you enough. It really means the world to us knowing the love and support that is out there for my father.
It's been a while since we've written on here so I wanted to give an update on the status of my father's condition. Back in January 2017, we were able to get him accepted into a clinical trial in Boston, MA. Once a week, we drive to Boston so he can receive the drug for an hour via intravenous (I.V.). On the days we do not travel to Boston, he receives the drug by using a nebulizer once a day. Throughout the trial, the doctors at Boston have tested his strength and breathing levels and since he has started, his strength has remained relatively the same and his breathing level has slowly improved over time. The trial was a 6 month trial but after speaking with the doctors, we were allowed to continue this trial until the new approved FDA drug, Radicava, comes out in late August. We are so excited for this new drug to come out as it slows the disease down by 30-40%.
Recently, we have come across a supplement called Lunasin. After reading some reviews on this supplement, some people with ALS have received their speech back and some have gained back swallowing capabilities. After receiving the approval to take this drug from my fathers doctors in Boston, he decided he wanted to try this supplement to see if it will have any positive affects. Unfortunately, this drug is a little expensive and the amount of medicine that he must intake over the weeks increases week by week.
Although we are trying every single medicinal option there is available to slow down the progression of this disease, these medicines have not 100% improved my fathers overall condition (i.e., speech, weight loss, breathing capabilities and mobility). Considering that it is getting more and more difficult for my father to walk, there are renovations that we must make to our house. My father now needs an electric wheelchair to get around, so we will have to install a wheelchair lift on the back deck. In order to get the wheelchair in the house, we have to replace the back doors with bigger doors. Aside from getting into the house, we will also have to implement interior renovations such as the bathroom to make it wheelchair accessible. As you can imagine, these are very costly renovations for my family considering all of the medical expenses that we have incurred over these past few months.
This is in no means a plea for money, but if there is anything you can do to help our family during this difficult time, it would be greatly appreciated.
I am so thankful all of your help thus far. As a result of all the previous Go Fund Me donations, we were able to get my father into the clinical trial in Boston, MA and continue to test out new ALS treatments including Lunasin.
Again, thank you for all of your help and support thus far, we would not be able to do this without all of you.
Warm regards, Kyle
Kyle Mitchell, Dave's son, will be managing the withdrawals.