Newborn Declan Bettuchi came into this world on October 8, 2019, and while he looks calm and perfect, he is fighting a battle for his life. Declan, like his older brother Shane, was born with Severe Combined Immunodeficiency Disease (“SCID”).
SCID is a deficiency of the immune system’s two major weapons -- antibodies and T cells and is very rare. The chances of a child being born with SCID are about one in 60,000. Whatever the underlying cause is of SCID, the consequences are nearly always the same. The child lacks almost all immune defenses, develops life-threatening infections, and needs major treatment to survive beyond infancy. Although the specifics vary from case to case, these children are vulnerable to serious infections caused by bacteria, and also by viruses and germs. SCID is also known as the “boy in the bubble” syndrome, because living in the normal environment can prove fatal to these children.
Declan and Shane are my great-nephews. Along with my great-niece, their beautiful 3-year old big sister McKenzie, they are the children of my niece Amanda and her long-time boyfriend Billy. After a very tough past year where the family was in and out of the hospital with Shane (who will be turning one on November 27th), Shane’s numbers look great and the transplant he had back in March appears to have been a success. They were looking forward to being able to spend time as a family at home together for the upcoming holidays when they were delivered the news that baby Declan has the same life-threating disease. Now they have to go through everything again, every long hospital stay, every disheartening meeting with doctors, every sleepless night wondering if your newborn child will get to enjoy the life you wish for him.
The only cure for the immune deficiency is a bone marrow transplant. Until the transplant, they will be going into Boston Children’s Hospital for his IVIG treatments, while also bringing Shane for his checkups to make sure he’s continuing on the right track. Before Declan can receive his transplant, he will need chemotherapy which will bring all of his levels down to zero and he will have to stay in the hospital until the transplant. The bone marrow transplant procedure could keep little Declan in the hospital for up to ten months.
While Declan is in the hospital, Amanda and Billy will need to take turns going back and forth to Children’s Hospital in Boston so that one is home with their children, McKenzie and Shane. They have both been unable to work since before Shane’s transplant last March. Thankfully, the money raised for Shane through his GoFundMe page, and the benefit his family and friends threw for him earlier this year, have helped them be able to pay their mortgage, car payment, house bills, food bills and other basic household finances. But as we all know money only goes so far and now they will be out of work for the foreseeable future so Declan can get the care he needs.
I’m asking for everyone’s help so that Amanda and Billy only have to worry about Declan’s health, transplant and recovery and not worry about how they are going to pay their bills and feed their children. Please find it in your heart to donate to such a great cause, any amount is greatly appreciated and needed. They also have a Venmo account (@billy-bettuchi) if you’re not comfortable going through GoFundMe.
Please help us in coming together to show support to this amazing family in their time of need. I will continue to post updates about Declan through his journey and how your generous donations are helping him and his family.
Thank you all so very much.
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