Another year over, and yet again, an incredible accomplishment. This year, once again, we raised over $41,000!!!! I hope that everyone had a great time. I just wanted to thank everybody again for coming and for supporting Luke, our family and supporting the Phelan-McDermid Syndrome Foundation.
On October 7, 2021, we got the diagnosis that Luke had Phelan McDermid Syndrome. We knew that something was wrong, but I will say I did not expect that call. Sometimes it seems a little unreal even today.
Once we found out, I started to research on things that I could do. This was not a selfless thought. It was things that I could do to help me, to help my family, and to help Luke. I came up with a couple things.
Since that day, Luke has participated in two clinical studies. One is a natural history study that will hopefully lead to a better understanding of the syndrome and help lead to better treatments and a cure one day.
The other clinical trial was an experimental drug that in theory, should help increase the growth of neurons in his brain and help with learning and symptoms of the syndrome.
We were able to do both trials where I had to go to New York five times with him, then my pediatrician spoke with the doctors in New York and they agreed to monitor him here and we are currently in our second round of injections for Luke.
When we started these injections, 1 year ago, Luke was not talking more than one word at a time, he could not tell the difference between hot and cold, he could not really feel pain at all, he had very minimal endurance, poor balance, and he couldn’t tell me his basic wants and needs.
This drug is not the only thing that Luke has been doing. He is also getting speech, therapy, music therapy, occupational therapy, physical therapy, and he was in ABA therapy for a while. I do not know what the cause for his progression is, but his progression has been wonderful.
I think it is probably a little bit of everything. Luke is now a little parrot, he will tell me if he is hungry. He will tell me if he does not like something, he will tell me if something hurts, and he can tell me if things are hot or cold. Luke is safer now, I think that he is happier because he can obviously tell me what he needs and he is continuously progressing, which is literally all I can ask for.
The travel for the trial was not covered and to continue the injections is also not covered by any insurance and it is very expensive. I changed my work schedule to allow me to be able to take him, and I would have gone into debt for all of this, but because of all of you and all of your support, we didn’t have to.
Last year we made just over $40,000 profit at this tournament. $21,000 was put into Luke’s trust, $8,000 was given to the PMSF, almost $7000 in drug expenses and travel to NY and we still had some in his account for private therapy. It’s incredible.
Metrowest anesthesia group is my work group and I thank them for their constant and unconditional support that they did not have to give, and on top of that, they bought everyone dinner at the tournament. They are family and many of them were there Saturday, I love them all and I appreciate them.
I also want to say a special thank you to Kara Blue. She is the basically the president of Locals Phor Luke, and an extension to my family. She loves my boys like her own and she takes care of us, I cannot survive without her.
Thank you to my family and to each and every one of you for your continued support for Luke and our family. A specific thank you to my parents and Michael’s parents. Their hearts break the same as ours with every bit of bad news and they celebrate every victory. This is not easy for them and they pretend like it is. We love you.
This will be a never ending journey for us, and because of all of you, you have made it easier, I love you all. I appreciate you all and I hope you had amazing time and will see you next year.
All my Love,
Courtney
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