Miles for Mariella, Medical Fund

Mariella was born with multiple congenital defects known as VACTERL Association. VACTERL is an acronymn for the affected areas of the body: Vertarea, Anal, Cardiac, Tracheal, Eosphageal, Renal, and Limb. Mariella’s lists is as follows: (V) hemi vertebrae/fused vertebrae, congenital scoliosis, sacral agenisis (missing over half of her sacrum and has no coccyx), tethered spinal cord with fatty fillum that was surgically repaired around five months of age, and a syrinx (fluid build up in her spinal column). (A) imperforated anus with vestibular fistula (had a colostomy bag for some time during her first year). (C) She had a PDA that remained open through her first year, but since it did eventually close, we have removed cardiac from the list. (E) Eosinophilic Esophagitis (a build up of white blood cells in the esophagus due to allergic reactions, in Mariella’s case, after trials of different allergens - we now avoid peanuts, tree nuts, egg and dairy; have also tried restricting pork, turkey, and corn. (R) solitary right kidney that has had reflux in the past, although not currently of concern, (L) hemihypertrophy meaning half of her body is larger, more developed than the other, most visible in her feet. Mariella has been extremely strong and has continued to amaze us with her development! 

One of the main concerns we have had for Mariella since her birth was continence. We have reached a point where we know she will not be able to control things on her own. This summer, Mariella will be having bladder neck surgery, Mitrofanoff, and ACE producers to give us alternatives to provide her more control and stability over her bladder and bowels. Our goal is for her to be able to wear underware in school and be able to have an appearance of "normalacy" so as to limit the teasing (which, sadly, has already begun in K4). 

We are raising money primarily to cover Mariella's medical cost. Mariella has asked to be able to go to Disney World when she is able to cath herself. As much as we would love to provide her with this perfect reward for being such an amazing little girl, we just don't have the finances to cover the trip. We are hoping that through this fund, we will be able to cover her medical cost and be able to use money we would have used for her care to provide her with this well deserved reward. 

Anything you can do to help us improve the quality of life for our little Jelly Bean will be greatly appreciated. We know already how blessed we are to have a network of friends and family supporting us, and we will be even more blessed with your help. Thank you for hearing our story, and helping us provide for our little girl!

For more information on our journey, please visit:
Mariella's Caringbridge