This year our Fish Fry will benefit the family of Tray Cromwell. Tray and his family were our guests at tonight’s meeting where they shared the story of how we got here. Tray is the youngest grandson of Carl and Linda Cromwell (members of our club). Carl is a recent past president and was instrumental in getting our 501c3 setup initially. Little did we know then that it would be used for his grandson’s family just a few short years later.
Kevin Cromwell began by telling us a story of one of his childhood memories of his dad (Carl) driving him around West Virginia with a truck load of brooms (made by the blind). In fact, both Kevin and Tray had presented at our club before in years past. Kevin did a program on science and a few years later Tray and his brother Tyeler (along with Jacques Gilbert years before he became the mayor) asked us to support the Skate Park in Apex. And we did provide some financial support, of course.
Tray and his siblings (Tyeler and Bella) all grew up here in Apex. Tray was not only a skate boarder, but he also played guitar and had become a lab manager. In March of 2023 he took a new job in San Diego so he was on his way there when the trouble began. It started out as some pain in his shoulder and the progressed to him having difficulty gripping a screwdriver. Eventually he went to see the doctor who suggested that he also see a neurologist. The diagnosis was Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or more commonly Lou Gehrig’s disease. This disease attacks the motor neurons which tell the muscles what to do. It affects everyone differently and as it progresses it can ultimately affect a person’s ability to walk, talk and even breath. It has been likened to “slow moving paralysis”.
Although it usually affects people 55 or older, Tray is only 25 years old. Duke said that Tray is not the youngest patient they have ever had, but he is the youngest they currently have. Kevin said that roughly 5 people in 100,000 contract this disease and only about 1% of those are 25 or younger. When Tray informed his parents of his diagnosis he said that he had won the lottery – just not the one he wanted to win.
It has now been less than a year and Tray is already having difficulty walking and talking so the disease is definitely progressing. But he has an amazing attitude and is learning as much as he can and fighting as much as he can. He is a very intelligent and brave young man and, thankfully, it does not affect the brain. So he is learning as much as he can about medications and treatments and wants to do all he can to help others. The average life span after diagnosis is 36 months.
Tisha shared that since the disease does affect everyone differently there is no standard treatment. And that is one reason why insurance companies generally do not provide much help. In fact, their request for treatments have all been denied so far. Tray is now officially disabled which would normally mean that he would be allowed to remain on his parents insurance policy after the age of 26 but that has also been denied so far. The only medication they have approved so far is one that was created 30 years ago – they will not approve any of the more modern and more promising medications so far.
And as things progress they are going to need to provide treatment, medication and even some home modifications like ramps and other accessibility changes. Those things all cost money which insurance will not provide. They don’t even know yet what will be needed but, clearly, there will be needs. That is why the Apex Lions Club has chosen the Cromwell family as the beneficiary of this year’s Fish Fry. We should be able to raise a few thousand dollars to help them meet these needs and take some of the burden from them. Not only that, we also learned that if they were to setup a GoFundMe or other donation tool there would be service fees (not small) taken out and those contributions would not be tax deductible for the donor. So we are going to make use of our 501c3 (Apex Lions Charitable Fund) to provide a way for donors to make tax deductible donations and we will not charge any fees. This is our way of serving and it will allow 100% of the money to go where it is intended.
We have setup a page on our web site here with a link to make such donations. We hope that you will donate as well as come to the Fish Fry on April 5th. Tray and his family plan to be there helping too!