Jackson is the sweetest little 5 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.
- Patricia Mullady
- Anthony Caputo
- Heather Gundlach
Organizer and beneficiary
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