Our son, Jack was born with several congential abnormalities. As a result he spent the first 70 days of his life in the NICU in 2016. We've been home now for over a year, and though Jack has stayed healthy, for the most part, he has faced many challenges. One of his challenges is the limited mobility in his legs, thus he is unable to crawl, walk, or bear weight. Due to his positioning in the womb (one theory), his legs malformed and his feet were twisted around backwards. He has not been able to fully extend his legs, and has extreme sensory issues anytime his legs are touched. At 6 weeks old, he wore serial casts to realign his feet with his knees. He then had to wear corrective shoes and a dobbs bar 12 hours overnight so that his feet would stay aligned.
At about 10 months old, his orthopedic ordered an MRI of his legs, as X-Rays, Ultrasounds, and CT Scans were unable to locate his patellas. The doctors assumed at this point that he did not have patellas. The MRI showed that he does have patellas, but they are latterally dislocated. Which is to say, that both his patellas are located on the outside of where his knee cap should be. As a result of this misplacement, his tendons and ligaments pull his feet outward which also causes major contractures in both his knees, thus unable to fully extend. We also had the first step of genetic testing (a micro array) done which has shown this is not a genetic disorder. No doctors have been able to tell us why or how this happened, nor if he will ever walk or have full use of his legs. We tried braces, therapy, massages, etc to see if we could get his hamstrings to release, but to no avail. The only way for him to have a chance to walk someday, is surgery.
At 10 months old, he was too young and too frail to undergo surgery. He also has a trach (since 1 month old) and a gtube (since 2 months) for feeding, thus just to breathe and eat takes a toll on his body. The doctors wanted him to be big and strong before they would even consider surgery. So, we made that our focus for the past 10 months. We worked with a nutritionist and GI and shifted all our focus to getting him on the growth chart as he was less than 1% at that point.
Fast forward to today, 20 months old. he is now in the 50th percentile both in height and weight! He is big and strong by all accounts of the word and he has been approved for his leg surgery! It will take place on February 13th at Johns Hopkins in Baltimore. We live about 2 hours away and he will be in recovery for 1-3 days.
Friends and family have asked us how they can help, what they can do, etc. The truth is, more than anything, this takes a huge toll on us financially. I hate that it always comes down to that, but the world doesn't stop spinning when you have a medically fragile child. So we are asking for any and all support you can offer.
It’s been a tough go for our son, but his strong will, fearlessness, and persistence have allowed him to continue to improve and defy medicine! He is an inspiration to everyone and we as his parents are his biggest fan.
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