East Haven Twins With Rare Disorder Need Your Help

Photo Credit: GoFundMe page

Lynn Tommessilli, friend of Dianna Schatzlein-Ahern, the single mother of the East Haven twins who suffer from Prader-Willi syndrome, a rare disorder, in addition to autism spectrum disorder and other related conditions, is making an effort to help her friend, according to the New Haven Register.

Tomessilli set up a GoFundMe page last month, according to the New Haven Register.

“There’s being a mom and then there’s what she does,” Tommessilli said via Register.

According to the GoFundMe:

Eddie and Stevie are 11 year old identical twins.

According to the GoFundMe page, they were born with Prader–Willi syndrome (PWS) and Autism Spectrum Disorder and other related illnesses. They were born early and survived, even though the odds were against them.

Prader-Willi syndrome is a complex, rare genetic disorder.

“Children with PWS typically have weaker muscles, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity,” the GoFundMe page states.

“The drive to eat is never satisfied no matter how much food is consumed, necessitating constant and continuous supervision. PWS is a lifelong, life-threatening condition. Currently, this is no known cure for PWS,” the page states.

Eddie and Stevie have already had many medical procedures/surgeries. Stevie just had surgery to repair his leg that was causing him to use a walker and a wheel chair.

“He was amazing through it all. He is doing very well and is walking. They both are so brave and determined,” the GoFundMe page states. “...They will have to endure more procedures and surgeries.

It costs $500.00 per month to keep Eddie and Stevie in an after school program so they can enjoy arts, crafts and to socialize, the GoFundMe states. Their mom can no longer afford this; so they are not going.

Money is needed for their after school cares and staggering medical fees and care.

Those who wish to help can follow this link.

The full New Haven Register report can be read here.