Meet Madelyn

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Madelyn Grace Kirby

Madelyn Grace Kirby was born on August 1st, 2016 at 3:59 a.m. to parents Kenneth & Jenna Kirby and big brother Tripp. It was very difficult getting her length due to contractures in both her arms and legs. She needed a little help breathing right after birth and her blood sugar was low, so, after only one minute of holding Maddie, she was whisked off to the NICU. The doctors were concerned with fluid on her lungs, so, they performed an xray where they noticed her shortened humeral bones. On Day 2, the NICU doctor came to our hospital room and delivered the news that our daughter had Rhizomelic Chondrodysplasia Punctata and we were going to be transferred to Nationwide Children’s Hospital for further Genetic testing. Thirty days later it was confirmed she had RCDP Type 1. Our hearts were shattered and we were quite fearful due to the grim information we had quickly researched on the condition.

After only a few days in the NICU at NCH, Madelyn caught the Rhino Virus and had to have a NG tube placed due to the inability to coordinate her suck/breathe/swallow reflex. For the next 8 weeks, Madelyn required oxygen assistance as her stats would drop to dangerously low levels. By the end of week 8 she was able to maintain her oxygen and heart rate levels without any assistance and, therefore, it was time to plan for discharge. We opted to go ahead and have a G-Tube placed as part of her discharge plan with plans to work on oral feeding therapies while at home. A week later, we were out of the hospital and adjusting to our new normal, however, we were not out of the woods yet. Her congenital cataracts had progressed to the point that surgery was necessary for her to see. She was scheduled for two separate procedures, one for each eye, and now requires contacts to both see and protect her eyes.

We continue to work on oral feeding, and Madelyn is able to successfully nurse for the majority of her feeds, with “top off” via her G-Tube to make sure she’s getting enough nutrition. She also loves to suck on fresh, juicy fruit! Her arms and legs have loosened up tremendously and she’s even starting to try to roll over on her own. There have been a few setbacks along the way which included multiple inpatient stays for various reasons, but thankfully we now have an amazing medical team and support system to help keep our beautiful little girl as healthy as possible.

 

Help Us End RCDP

Most Children with RCDP do not survive past 5 years of age. Our organization is currently raising monies for research, and working diligently to raise awareness of RCDP.

Your help is needed to put an end to this terrible disease.


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