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Success Story: Ayden

FUND IT FORWARD received this letter from his parents:

Our Ayden is a surviving twin. He was born in October 2011 with Microcephaly, Hydrocephaly, and Lissencephalus that caused Cognition Retardation which resulted in Cerebral Palsy. He has severe developmental delays. He is 4 years of age. He has full vision and hearing. His motor skills and verbal communication is of a 3 month old and his social skills are of a 7 month old. He has the best laugh and smile. Always happy unless something is wrong. He can vomit then smile! Oh and his teeth are beautiful!

He and his twin, Brayden were bunked in the womb sharing the food supply. Brayden's umbilical cord was abnormal. At 24 weeks along, his supply was cut off and Ayden's brain became overloaded. Brayden passed away in Utero. Ayden's brain suffered. It stopped growing momentarily and then grew at a very slow rate, allowing partial mass to be filled with fluid and brain to grow smooth. Birth for both was a C-section at 39 weeks. Ayden scored an 8 on his APGAR test and he did not have to be sent to PICU! He has an older brother Cody age 15 and a sister Breanna age 10.

His first year was tuff! He had high tone and was uncomfortable. He was started on Baclofen for muscle spasticity, Ativan for anxiety, and Zantac for the acid reflux. His thriving began to fail at 3 months of age. He began to have an abnormal swallow. He underwent several swallow, upper GI, and lower GI studies trying to understand his body. By May 2012 he needed to have a surgery for a G-tube placed in tummy for feeding and medicine. It was great start for first 2 months, until the breast milk ran dry. Then a new issue arose with formulas. He was not tolerating the feeds and vomiting. We went through many trials for many months. (Still to this day, we do not have it 100% controlled, but at least it's a 75%)

Lissencephalus causes the body to create a higher level of secretion (drool, phlegm, respiratory, and sinus issues). By October 2012 he began to develop breathing difficulties through the nose cavity. He had a surgery in November 2012 for his nose. But the recovery did not go so well and was rushed into PICU for aspiration. He then was scheduled for a Fondo Placification of the stomach that same week. That was a difficult time for him. His body wanted to vomit but he could only heave. 3 months later his stomach undid the surgery and he was able to vomit and burp normal. By December 2013 he was diagnosed with Hip Dysplasia. February 2014 He was given Phenol injections in his inner hip joint to reduce the joints coming out of socket. That lasted a year but did not stop the hips. We are currently waiting for the dates of surgery for releasing (slicing) the tendons to reduce the pulling. March of 2015 we had to change the Ativan to Clonazepam. He was suffering from his tone and had built an immune to his prior meds. May 2015 he underwent trials for a baclofen pump, but his tone is too inconsistent for the machine.

Support was not easy. He does not qualify for SSI. We had to find other resources to help. Medicaid was finally approved by September of 2012, through the Katie Beckett program. His medical supplies and RX's were then taken care of. We made due with pillows, blankets, and misc. items for support until he qualified for special Equipment. At age 1, we were able to get a Stander, by the age of 2 he was allowed an adaptive wheelchair. By 3 ½ we found a medical bed $450 through Craigslist. By age 4 he was allowed incontinence supplies. The most difficult has been transportation and home.

We purchased our home and moved in May 2015. However it is not set up for wheel chair and is not Hygiene care accessible. We make do with what we have.

The first van was for his (not so) easy car seat days. Then as luck would have it, June 2015 -coming back from vacation, traveling through the Shasta Mountains at 3 in the morning, we hit a Bear, which was chasing a deer! Everyone was ok, including the Bear! The van however, not so much! We then began the research for a new van with a conversion. July 2015, I was let go of my 24yr job. It has been a struggle since. We were able to purchase a 2014 Dodge Caravan but the conversion has not been affordable.

Ayden has Speech Therapy every Monday, Physical and Occupational Therapy every Thursday, attends Picollo School for Special Needs of ages 3 – 21. He enjoys it there! He has aquatics every Monday, Equestrian Tuesday, and Friday is sensory play. He gets to ride a school bus! He also has follow ups with Shriners Hospital every 6 months (4 hr. drive round trip) and Lucile Packard Hospital once a year (10 hr. drive round trip). And then basic care appointments around town. That is Ayden's 4 year story in a nut shell! A very large nut!

February 2015

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FUND IT FORWARD, P.O. Box 457, Wexford, PA 15090. Please include the child's name on your check.


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