Maddie was born with a congenital heart defect and endured several heart surgeries as a tiny infant.
As if this was not enough for one baby girl to endure, she was then diagnosed with infantile idiopathic scoliosis. Only 1% of children with this type of scoliosis have this condition between birth and 3 years old. Maddie unfortunately was in that 1%. Her treatment started with her wearing a series of body casts in hopes as she grew the casts would allow her spine to straighten.
Unfortunately, the casts did not correct the curvature of Maddie's spine. She recently had to undergo halo gravity traction which is a procedure used to reduce the degree of curvature in Maddie's spine. Spinal traction is the gentle pulling of the soft tissue (joints and muscles) to help straighten her spine. She began this journey about 2 months ago (since the moment the halo was put in place Maddie has been in CONSTANT traction) and still has another month to go.
The good news is the traction seems to be working! Her spine is beginning to straighten but my goodness she still has so much more to endure. At the end of next month, Maddie will have to be put back into a series body casts and the halo will remain in place until June! She has come so far but still has so much further to go.
Maddie's biggest blessings are the two incredible people she calls, Mommy and Daddy! Her mom, Amanda (nickname, Mango) was one of my students when she was in college and there is not a day that goes by that I am not sooo impressed with her strength, knowledge, selflessness, mother instincts and the ability to NEVER COMPLAIN! She and Maddie's daddy, Brendan continue to usher Maddie through her journey and provide for she and her baby brother, Colin. They are an INCREDIBLE young couple and honestly leave me speechless. They continue to put one foot in front of the other (when I can only imagine how difficult it must be) and NEVER ask, "why us?" They just continue to do whatever it takes to care for Maddie and her brother.
Beyond being an exceptional mom, Mango is an advocate for children with congenital heart defects (CHD) - please see photos). Although her days and nights are jam packed with caring for Maddie and her baby brother she finds time to give back (please see photo of project to collect totes for the parents with children in the Neonatal Intensive Care Unit where Maddie was a patient). Again, she leaves me speechless and in awe.
Maddie's daddy, Brendan continues to support Mango emotionally and work as many hours as he can to provide for his family and Maddie's medical cost. Mango and Brendan are an incredible young couple who are doing all the right things and making it look so easy.
My hope for this Gofundme page is to surprise Mango and Brendan with a bit of financial support (that they would NEVER ask for) to help support them in whatever way necessary. They are doing the "hard part" and I feel a desire to try and support them from afar with financial relief when it can be so hard to know how to help. They and Maddie (especially that smile) have touched my heart in so many ways and are such an incredible example of the true love and dedication of a mother and father.
One of the highlights of Maddie's life was traveling to Florida to Disney World through the Make-a-Wish Foundation just prior to the placement of her halo. A gift of a lifetime for sure from a very special organization. I am hoping through this page we can bring just a bit of that joy to Maddie throughout her recovery.
Please feel free to share this Gofundme page and donate any amount no matter how large or small. It all adds up and will hopefully positively impact such a deserving young family.
Lastly, Maddie's grandma and grandpa helped me to open a post office box for Maddie to receive cards, letters, activities to complete and messages of encouragement. Since Maddie's halo was put in place she has been unable to attend her pre-school and misses all of the other children and fun she has there. We are hoping we can fill Maddie's post office box daily with different activities, cards or letters to help fill her days while she is working to straighten her spine. If you would like to send something to Maddie, please address it to:
Maddie's Spirited Journey
P.O. Box 571, Amsterdam, New York 12010.
(This post office box is open until September 8th, 2018).
Thank you in advance for your consideration to donate or send something to Maddie. Together we can make a difference in the life of a very special girl and her family.
Tina Wilson Bush
- Cheryl Crayton
- Joshua Axtell
- Maria Cloos
- Corinne Gere
- Steven Durante
Organizer and beneficiary
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