Moving Mountains for Madison Jade

Madison Jade is a long-term survivor with Trisomy 18 (Edward's Syndrome) at age 11. She was actually considered a long term survivor at age one! She is a light in our world but has had a difficult time recently. She had a long hospitalization in July in Winston-Salem, NC at Brenner Children's Hospital. During this time both Micah and I were unable to work.  We had to be with Madison around the clock as she had days of unresponsiveness, then many ups and down in the days/weeks following, that required us to be making multiple medical decisions each day. Us both being out of work for a prolonged period of time has put significant strain on our resources. Medical bills are rolling in now that we are home. We are also still trying to catch up on missed bills from July and August for daily needs such as the mortage and groceries.  We have an incredible network of support and many people have asked how they can help. Quite honestly, while we were in the hospital,  we needed prayers as we were trying to keep Madison alive and work with multiple specialists to help her recover. We couldn't really think past that point at the moment. Now that we are home, the reality of life being put on hold has set in. Bills are piling up.  The most vulnerable yet honest answer to the question of "How can we help?" is through money to help us get caught up on our mortgage, bills, and cover medical expenses. It is very hard to be so raw and open about what our true needs are, but this is our current reality.  We will be making MANY trips to Brenner Children's Hospital for specialists follow-ups. It is about a 2.5 hour trip each way so each appt is all day event- which means many more days out of work for Micah and I.  Madison has scheduled appointments coming up for neurology, neurosurgery, enhanced care team, urology, orthopaedic, gastroenterology, geneticist, cardiology, and likely endocrinology in the near future.  Also in the past month, Madison has had three very long seizures- ranging from 6 to 9 minutes in length. She now has to have a rescue seizure medication available at all times.  It is a scary situation to watch your child be in a prolonged seuzure and there is nothing you can do to stop it.  We are working closely with the neurology team and enhanced care team and have been making adjustments to her seizure medications under their direction. There may well be further testing/procedures to try to find out why she is having these longer seizures.  We have asked for many prayers throughout these 11 years we have been blessed with Madison's presence here with us, and also during the prenatal period after her diagnosis at only 16 weeks into the pregnancy.  This time as much as I hate to admit it, we need more help.  Please consider making a donation or sharing our journey to help us be able to maintain our home and keep our family afloat. We continue to try to be strong to face these medical issues as they arise and need your help to help us 'move mountains' so Madison can get the best care and quality of life for as long as God blesses us with her here on Earth.  Thank you for your love and kindness.  The McCauley's
Micah, Angie, Madison, and Emma  ❤