Baby Henry’s Medical expenses

Hi, my name is Mikayla Standley and I’m raising money to help lessen the burden for three of my favorite people.

Two of my best friends, Rose and Neil Wilson, recently had their first baby named Henry. Just as all newborns in MA do, Henry underwent a newborn screening to check for any underlying genetic disorders. Shortly after returning home, they received the news that there was a flag on his screen for a generic disorder call Spinal Muscular Atrophy(SMA). SMA is a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking. It is the number one genetic cause of death for infants.

About a week later they received confirmation that their sweet boy has the rare condition of Type 1 SMA. “Also known as Werdnig-Hoffmann disease, SMA Type 1 is the most common (60%) and severe form, usually diagnosed during an infant’s first 6 months. Babies with SMA Type 1 face many physical challenges, including muscle weakness and trouble breathing, coughing, and swallowing. They may need breathing assistance or a feeding tube. If not treated, Type 1 can be fatal early on in life.” (curesma.org)

Henry and his family have a long road ahead. They are lucky to be able to live within an hours drive of some of the best specialists in the country at Boston Children’s hospital. Henry will be undergoing gene replacement therapy, which should stop the progression of the disease.

While this treatment is going to give Henry his best shot, it is also incredibly expensive, time consuming, and worry inducing. I’m hoping that we can raise enough money to take one less worry off of this amazing family’s plate. Their hearts and minds need to be 100% focused on sending healing thoughts and love  to their precious little boy. Rose and Neil are two of the most loyal, giving, and STRONG people I know. Please help me, help them.