The Neuromuscular Studio would like to ask your help in supporting little Madison McHugh. Last year we began the start of what we hoped would be an annual tradition of supporting a Studio family in need for the holidays. When we began the search for our family last year, I immediately contacted Anna McHugh, long time (as in from *The Beginning* 12 years ago!) client and Studio supporter. I knew that her daughter Madison (then 1 year old) was in and out of the hospital due to a congenital heart defect and other related conditions. Some of Madison’s hospital stays at Phoenix Children’s were months long, and she also had to travel to Stanford for open heart surgery.
When I posed the question of their family being the recipient of our Holiday support last year, she graciously thanked me but asked if we could instead support another family who was in more need whose son was going through the same heart surgeries for a similar defect, and whose family was struggling with mounting medical bills due to their insurance plan.
When I recently heard that Madison has continued to have hospital stays and will have another heart surgery at Stanford in the future, and that her husband is working 3 jobs just to keep afloat with monthly bills, I knew that I wanted to support them this year as our Holiday family!
Please take a moment to learn about Madison’s situation below as written by her Mom, Anna.
“Our princess Madison is fast approaching her 2nd Birthday on December 17th.
In short, Madison is a MIRACLE! Her captivating spirit has strengthened everyone who comes in contact with her. She is so full of love and laughter. We have been humbled to be her parents, and blessed everyday to have her in our family. We also have two boys Brody age 7 and Kellan age 6. My husband, Ryan, works 3 jobs including his full time job as a Firefighter for the Town of Gilbert.
Madison was born with a chromosome deletion called 22q or DiGeorge Syndrome. With that, she is faced with MANY challenges. She was born with a Congenital Heart Defect called Tetrology of Fallot with Pulmonary Atresia..(No Pulmonary Artery) MAPCA’s and a Double Aortic Arch with a Vascular Ring. She had her first Open Heart Surgery at 3 months old by Dr.Frank Hanley at LPCH in Stanford, CA. This was the first of multiple heart surgeries she will have in her lifetime. She had a submucosal cleft palate (repaired Nov 2014). She has also been diagnosed with Visceral Hyperalgesia (gut pain), Failure to Thrive, Dysphasia and Aspiration, Feeding Tube dependent, severe GERD, Chronic Lung Disease, Necrotizing Enterocolitis, Absent Parathyroid Gland, Immunodeficiency, Protein-C deficiency, and Low Muscle Tone attributing to Developmental and Physical Delays (Uses braces to stand. She is not walking yet).
Her first 7 months of life were spent in the hospital both at Phoenix Children’s and Lucille Packard in CA. She has been hospitalized numerous times since then and has undergone 8 Surgeries so far.
Madison is no stranger to miracles. There have been at least 5 times that we can count, probably more, that she SHOULD have died. But she continues to amaze us, teach us, and inspire us to be better, pray harder, and never give up.
Currently, we attend weekly therapies including PT, Speech, and Feeding Therapy. Her next open heart surgery will be just around the corner. But for now, we are taking each day as it comes.
Our family has been through so much. But, we recognize the blessings that God has given us. We are especially grateful every day for Madison, despite the incredible financial burden that has been placed on our family. Our deepest and most sincere Thank You to The Neuromuscular Studio and Rachel Carroll for being another great blessing in our life.
Anyone who would like to follow her Facebook Page may do so.
Madison’s Heart Journey Facebook Page
~ Anna McHugh”
