Medical for Maddy

Hello, as many of you know or don't know, when our sweet Madison Saige was born, we were very shocked to learn she was born very ill. We quickly learned after the delivery that Madison was actually born with 12 congenital defects; (VACTERL).  She spent most of her first year in and out of the hospital. Fast forward to today and Madison has had about 30 surgeries. Which has led us all to a great deal of PTSD as well as hospital anxiety. Now that Madison is 2 she fully understands when we go to her weekly appointment that it's not the place she wants to be. 

We are seeking support as we have exhausted all our efforts trying to get some type of funding from the government or local programs or charities and unfortunately the system has a grey area and is unable to help us. We are asking for help for medical expenses which include hospital parking for Madison’s next surgery which is Sept 19th we will be in the hospital for 7 days provided everything goes as planned.  Keyan, her dad, will need to take 7-14 days off work to help care for our other 2 children while I stay in the hospital with Madison.  That time for him is unpaid. We also are seeking funding for her new lifestyle as the procedure she is having is giving her a cecostomy which will have her in the washroom for 1-3 hours a day, which isn't age appropriate for a little 2-year-old. We would like to put a sensory wall beside the toilet as well as have a play-station on wheels that can roll to the toilet to help her educationally while she spends a great about of time in the washroom. Anything at all is appreciated. Even $5 could help pay for a portion of daily parking.  We are a 1 family income. Keyan had to leave a good paying job so he could be closer to home to help out due to Madison’s illness and frequent surgeries. We appreciate anything at all. 
 
Madison was diagnosed with VACTERL, she has every letter of the acronym. 

 VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. Affected individuals may have additional abnormalities that are not among the characteristic features of VACTERL association.

Defects in the bones of the spine (vertebrae) are present in 60 to 80 percent of people with VACTERL association. These defects may include misshapen vertebrae, fused vertebrae, and missing or extra vertebrae. In some people, spinal problems require surgery or cause health problems, such as back pain of varying severity, throughout life. Sixty to 90 percent of individuals with VACTERL association have narrowing or blockage of the anus (anal atresia). Anal atresia may be accompanied by abnormalities of the genitalia and urinary tract(genitourinary anomalies). Heart(cardiac) defects occur in 40 to 80 percent of individuals with VACTERL association. Cardiac defects can range in severity from a life-threatening problem to a subtle defect that does not cause health problems. Fifty to 80 percent of people with VACTERL association have a tracheo-esophageal fistula, which is an abnormal connection (fistula) between the esophagus and the windpipe(trachea). Tracheo-esophageal fistula can cause problems with breathing and feeding early in life and typically requires surgical correction in infancy. Kidney (renal) anomalies occur in 50 to 80 percent of individuals with VACTERL association. Affected individuals may be missing one or both kidneys or have abnormally developed or misshapen kidneys, which can affect kidney function. Limb abnormalities are seen in 40 to 50 percent of people with VACTERL association. These abnormalities most commonly include poorly developed or missing thumbs or underdeveloped forearms and hands.

Some of the features of VACTERL association can be subtle and are not identified until late in childhood or adulthood, making diagnosis of this condition difficult.