Nicole Eric Krzyzanowski is organizing this fundraiser.
Hi everyone! Many of you have been with the Hanko family, from the beginning, on the journey of their sweet—now toddler—son, Noah. As a baby, Noah was diagnosed with Cloves Syndrome which is an extremely RARE overgrowth syndrome, which affects many areas throughout his body. Melinda and Andrew, from the second they were told from an ultrasound that something wasn’t right with Noah, have been on a HUGE roller coaster ride. Noah is such a funny, loving, silly boy. He loves playing with both of his brothers and keeps us all laughing with his goofy personality. Developmentally, Noah is hitting every milestone a toddler should be; he is learning to adapt and function well with his large hands. Many people stop and stare because Noah’s hands are about the size of an adult male hand. Melinda and Andrew are meeting with the hand doctors in the near future to discuss upcoming hand surgery to remove fatty tissue and possibly removing the growth plates in Noah’s fingers (another story for another time). However, even with how great Noah is doing overall, a recent MRI appointment at UVA hospital—University of Virginia—has raised some concerns about possible growth of vascular malformations (fistulas) in his body. One is in his neck and the other near his spine. A fistula is an abnormal connection, in this case, in between a vein and an artery and can cause ballooning of blood vessels which eventually will cause a lot of blood flow in the ballooned areas. This can cause clots and even heart issues if the blood flow is too high. UVA sent the MRI results over to the Vascular Malformation Clinic at Boston Children’s Hospital for review—they are the top hospital for Cloves Syndrome. Based on their review and expertise, Melinda, Andrew, and Noah will need to go see the doctors at Boston Children’s Hospital to review the imaging and discuss treatment options for Noah. They are scheduled to meet with this clinic on September 21, 2018 but will also need to see a few others doctors in the hospital as well a few days before. As many of you know, Noah periodically goes to CHOP (Children’s Hospital of Philadelphia) for MRI’s, check ups, and meetings, and Melinda and Andrew always pack up and make the drive from Virginia to Philadelphia. However, with Boston being much farther of a drive, we would LOVE to get their trip and stay payed for so they would be able to fly there! As their family, we see, first and foremost, the stress and concern the Hanko family goes through as Noah grows and develops since Cloves Syndrome has so many unknowns. Anyone who knows them knows the faith they have in the Lord and how they trust Him to protect and watch over Noah which is such a big testimony to who they are as a family. Secondly, we see the financial burden they carry as they see so many specialist and hospital trips—as well as ER visits which happen pretty often due to bleeding from his legs, if his feeding tube gets pulled out, or simple sickness that becomes serious for Noah since he has a compromised immune system. It all adds up and we know the underlying stress that bills can bring. Which brings us to this Gofundme page for the Hanko family (I totally wish it could be a surprise but unfortunately with social media they will find out) but our goal is to raise $2,000 for them—this would cover flights, Melinda and Andrew’s hospital stay, and meals. We want to give them a quick and easy trip to Boston and shower them with support so they know they aren’t walking this road alone. We just want to thank you so much in advance, every little bit will help and we request your prayers as the most important thing—God has been so faithful and we know he created Noah for his glory so we have full confidence in Him! “I will sing of the mercies of the Lord forever; with my mouth will I make known Your faithfulness to all generations.” Psalm 89:1