Jay and Family
By Barb Smith
Jay Smith, our son, and his wife, Melissa, grew up in Doylestown and attended Central Bucks schools as well as colleges in Philadelphia. His dad, Gene, is a retired CEO of the YMCA and his mom, Barb, is a retired teacher in the Central Bucks School District.
In 2014 Jay was diagnosed with ALS at the Mayo Clinic. They said, “Go home and put your affairs in order. There is no cure, and life expectancy is 3-5 years.” He and his wife cried for a week, knowing what was coming down the road. He had bulbar onset, which affects the speech first. You lose your ability to speak, swallow, and your legs become weak; you can no longer use your hands and arms. You are on a feeding tube and eventually on a trach and ventilator to breathe. But your mind remains perfectly clear! You know exactly what is happening to you. It’s beyond your control.
Jay’s youngest daughter was four, almost five when he was diagnosed. She was very sad, confused, and frightened! At night, she and I would often take walks after dinner and she would tell me, “I want my family back.” I had trouble holding back the tears. She was much too young to really understand what was happening.
Before Jay’s diagnosis, he and his older daughter, Loghan, were joined at the hip. Jay was always very handy and could fix anything. Loghan was six and had lots of fond memories of doing things with him. One day they found a broken golf cart in the neighborhood. Together they refurbished it. Jay taught her how to water ski.
When they needed a handicapped van, they had to sell the golf cart and ski boat. When the buyers took away their golf cart, she sat on the lawn and cried.
It broke my heart.
ALS has such an impact on the patient, spouse (partner), children and surrounding family. As his mom, I sat and cried as well. If only I could switch places with him.
Once we collected ourselves, we thought, “Let’s find a cure.” To date, there is no cure or effective treatment. It is an underfunded disease.
We contacted ALS/TDI, a research center in Boston, and raised $450,000 for them and the Houston Methodist Hospital ALS Research Center. Jay received an award in 2015 for his advocacy. Jay was in a wheelchair at this point, and his wife went back to work full time to pay their monthly bills. We needed caregiving for him.
After checking out what his health insurance company would pay to help with caregiving, we were shocked. NONE of the caregiving was covered, so we opened a medical trust and began raising money for his care.
Our good friend, Nancy Frates, whose son Pete started the Ice Bucket Challenge, contacted Jay and Missy and gave them some wise words, “Start raising money for your care. You’re going to need it.” ALS is called, “The Bankruptcy Disease”.
I hate to think of where we would be today without following her advice.
And now the Ugly Part. Today the only mobility Jay has is in his eyes, which are giving him trouble. He has care 24-hour-a-day with five caregivers. The out-of-pocket cost is over $225,000 a year, a staggering number, not covered by health insurance.
I give our incredible daughter-in-law, Missy, credit. She welcomes these caregivers into their home every day with smiles and hugs, not always an easy job. She works full-time, is raising two teenage daughters, and takes care of Jay when our caregivers are not available. It is exhausting and there is no break.
For the past 11 years, we have hosted a fundraiser for Jay’s out-of-pocket care and medical treatment. We have been so blessed with generous attendees, donors, and sponsors. Our local community and beyond have been extremely supportive. We could not do this without your help.
Also, many other ALS families who know about us, contact us for advice. We have guided many families toward resources and the first thing I say to them is, “start raising money. You are going to need it.”
Additionally, we have created a charity “The 90 Foundation” to help other families. Recently I received a call from an ALS patient, a single mom with two children who is about to become homeless. We are always happy to help. The ALS patients have it the hardest! Can you imagine, laying there day after day with no mobility, yet your mind is clear? How frustrating!
What can you do to help ALS families? Donations are deeply appreciated! ALS is a lonely disease. Visit anyone you know with ALS, and spend time with them. And do it on a consistent basis.
This past January 25, for the 11th year, the Smith Family once again hosted an annual DoItForJay#endALS fundraising event. They worked for months gathering auction items, planning a fun evening and securing sponsorships and donations. This year their theme was “practical jokes.” Jay was a huge practical joker.
If you would like to rewatch the event or make a donation, go to DoItForJay.org. You can also donate at bidpal.net/difj25 and Every90Minutes.org. All funds received go to help Jay and his family as well as other ALS families. Questions? Call Barb Smith 215-601-2529 or besmith8000@gmail.com.