Jackson Strong
Donation protected
First and foremost, thank you to everyone who is visiting this page. This is a wonderful family that I have known for many years. This little ray of sunshine, this beautiful little boy is my hero. I am hoping that we can alleviate some of the financial strain that they have experienced over the years (this year alone lodging, travel, food expenses have exceeded $15,000- and this is relatively low compared to what it has been in previous years). No one should have to go through what Jackson is going through, and no parents should have to go through what Aubree and Ryan are going through. My hope is that we can come together as Jacksons village and help out the best we can.
Jackson's Story:
Jackson is the sweetest 7 year old who loves flamingos and learning new languages (this week anyways :)). He has been fighting big medical battles since he was born and things continue to progress. At birth he had trouble with his airway and required surgery at just 3 months old to allow him to breathe better. From there his feeding difficulties got worse and we began seeing specialists at Cincinnati Children’s Hospital Medical center in February 2017. Over the years things have progressed from a feeding tube, to IV nutrition, to full intestinal failure, an ileostomy placement, multiple bleeding disorders, back fractures, immune issues... the list goes on.
Last year he came under the care of Bone Marrow Transplant and they have found what is believed to be an autoimmune disease in Jackson. His case is so rare we are still under work up, but have some of the best minds on it. With this, comes a lot of driving to Cincinnati for his medical care. The family has been driving to CCHMC for almost 4 years now, but the last year has been more frequent as he is getting worse. Starting in August, they had a routine visit turn into findings of back fractures and admittance for new medication. Shortly after arriving home, on 9/1 Jackson went septic and was air flighted to CCHMC where he stayed until 9/24. They then came home briefly to return 10/12 for routine followup, and then once home again he went septic 10/28. They were air flighted again and stayed until 12/12. Most recently they got home for a few days before he went septic again and was air flighted to CCHMC on 12/18. His body is getting worse, and unfortunately this will not be the last emergent visit to Cincinnati. They have spent roughly 90+ days at CCHMC since September 1.
In the midst of all of this, their other children have had increasing medical needs as well that require more visits to CCHMC. This family means a lot to me and has never asked for help, but the strain is taking its toll. It’s roughly 700 miles to Cincinnati one way and the drive is about 10 hours. Between gas, food, hotel stays, and basically managing two households, it is financially taxing on the family. While discussions of moving are becoming more frequent, there are a lot of logistics to figure out and with Jackson only being home for short periods of time it has been difficult to formulate and carry out.
Again, thank you to each and every one of you, from the bottom of my heart.
#JacksonStrong
Love,
Patty
Organizer and beneficiary
Patricia Perry
Organizer
Mastic, NY
Aubree Midgett
Beneficiary