Pennies for Parker

Hello!

Our names are Hanna, Michelle and Amanda — friends of Alex & Haley McCullen and just three of MANY who adore their daughter, Parker.

Parker is a sweet, brave, silly, smart, loving 18-month-old little girl. She was born at Masonic Children’s Hospital on December 10th, 2021 with a massive cystic filled & tumor-like mass on the backside of her head. After lots of testing, she was diagnosed with a disease called “Congenital Melanocytic Nevus”. This disease is extremely rare, caused by the mutation of the body’s cells after conception resulting in a gene defect. Due to the mass being so large, she is missing the back of her skull and the nevus is also wrapped around her venous sinus, which is the main blood flow supply to the brain.

Because of the rarity of this case & this particular gene defect never documented in a newborn before in the US, it has been extremely hard to find a care team that is qualified or feels confident in helping Parker.

Since Parker's birth, she has had three debulking surgeries to attempt to get as much of this Nevus off - two at Masonic and one at The University of Chicago. In addition, she’s been in & out of the hospital for MRIs and numerous other scans to monitor her condition.

The goal of the last surgery in May 2022 was to fully remove the mass, but once they began operating, they didn’t feel like they could, due to the proximity of the mass to her brain.

Since then, both of those teams have opted to no longer participate in her case, due to the rarity and lack of experience with such disease. As anyone could imagine, it left Alex & Haley feeling extremely helpless not knowing where or who to turn to for Parker's medical care.

After further research of her own, Haley contacted a plastic surgeon in New York after finding a video on a very similar case. That surgeon referred them to a team of supreme plastic surgeons and neurosurgeons at Boston Children’s Hospital. This new team of doctors met Parker in person in January 2023 and agreed to start planning her next surgery.

After five long months of anticipation, it’s confirmed that Parker, Haley, and Alex will be traveling to Boston Children’s Hospital in August. Parker will undergo major surgery to remove the mass. This will be a multi-step, high-stakes operation, estimated to last 15 hours long. Per the surgeon, they need to be prepared to spend at least two months in Boston for Parker's recovery and post-operative care. During this time, they will incur large expenses with travel, housing, and medical bills, while being out of work.

To help relieve some of the financial burdens that their family is facing, we are organizing a benefit in July. If you are unable to attend, and would still like to donate, please do so here. The McCullen family is so deeply grateful for the support they have been shown during this extremely challenging time. Please keep the prayers and positive thoughts coming for little Parker, as her journey is far from over!

If you would like to read more from the beginning of Parker's journey, please visit the Caring Bridge here: https://www.caringbridge.org/visit/parkersjourney3