Help Demi fight APLAID

Help Demi fight APLAID; a rare, life-threatening genetic disorder.

Our dear friends, Kelli and Jon, need your support. Their daughter, Demi, age 3, has been in and out of the hospital since the day she was born. During pregnancy Demi stopped growing at 33 weeks due to an undiagnosed Intrauterine Growth Restriction. Born at 37 weeks, a mere 5 lbs., Demi was placed in the NICU. At only 3 days old Demi was Med flighted to Boston Children’s Hospital after an improper IV placement which resulted in the loss of all her fingertips on her left hand.

In the following months Demi was hospitalized several times due to multiple infections and complications, ultimately leading to a diagnosis of APLAID at age 1. Demi's condition is considered De Novo, meaning new beginning as her mom and dad are not carriers of this gene mutation. There was a 1 and 60 million chance of this happening.

APLAID impacts every part of Demi’s delicate little body, causing lung disease, focal seizures, having one functioning kidney, ongoing cardiac catheterizations, chemotherapy for symptom management and numerous infusions and immunosuppressants. Demi’s most recent complication of APLAID resulted in an 11-week admission recovering from open heart surgery.

Demi has almost lost her life twice in the battle against APLAID and yet she fights on…

Demi’s exceptional team of specialists are learning from her, as she has the most serious case ever seen throughout the country. Doctors recently told Demi’s parents they have exhausted all treatment options, and that Demi needs a bone marrow transplant. In addition, Demi’s big brother, Parker, was pulled from pre-school and the whole family is in isolation to protect Demi from illness as she prepares for transplant.

Kelli and Jon are heartbroken and scared, but they also know they must heed the doctors’ advice to give their little girl a chance at a normal life. A life without constant hospitalizations where she can be the happy, fun, strong, beautiful little girl that she is.

We are kindly asking for your support during this critical time. Your donations will go directly towards medical expenses, hospital stays, and essential costs to help ease the burden on Demi’s family during this heartbreaking time.

Any amount you can give will make a difference. If you’re unable to donate, sharing this campaign will also help tremendously.

Thank you for your kindness, generosity, and prayers as we rally around Demi and her family during these crucial upcoming weeks.

With deep gratitude,

Jessica Gonsalves and Kate DePamphilis