TEAM ASHER-Funding our Fighter

**UDATED  11/2019

Our five  year old son, Asher, suffered an anoxic brain injury after open heart surgery, and we are starting this campaign to raise the funds necessary to provide Asher with the therapy and nutrition needed to continue his positive progress.

Although our sweet Asher faced some challenges, born ten weeks premature, preliminary heart surgery at 5 pounds and 12 weeks in the NICU, he was a happy baby doing typical things at his own pace. He loved bath time, rolling on the floor and eating finger foods in his high chair.

In November 2015, his life changed. Asher was 13 months old when he had a second heart surgery to repair a congenital heart condition called tetralogy of fallot, a combination of four related heart defects. He was very unstable during and after the surgery and his only chance to pull through was being placed on a machine called ECMO that allows the heart and lungs to rest and recover. While being connected to the ECMO circuit, Asher went into cardiac arrest but was resuscitated. After three days on a ventilator and the ECMO, he exhibited signs of seizure. 

Multiple tests confirmed that Asher suffered a loss of oxygen to his entire brain. He would be severely affected developmentally and cognitively. As you may imagine, we were stunned and reeling with emotion. We spent five weeks in the hospital. Two weeks were intensive rehabilitation, but it was just too much for him; he was too weak after the major trauma to his heart and brain.

We brought him home and reality set in. Our previous life and anticipation of a healthy, strong baby boy had vanished. He was diagnosed with spastic quadriplegic cerebral palsy. He was limp, could not support his head or body, could no longer talk, and required a feeding tube. He cried or slept. We took a few months to recover emotionally, adjust to one income, learn to do life with a special needs child and, most importantly, develop a plan to help our Asher heal, grow and live a happy life. Our hope returned when we moved to Oakland County. 

Asher started attending a special needs school a few years ago and has really enjoyed being around other kids. He is able to get some therapies and use special equipment to help support him both physically and developmentally.  We are continually encouraged by the constant positive progress. 

The funds raised here will be used to support the next major steps in Asher’s development. 

First, Asher requires ongoing therapy. Intensive physical therapy is minimally covered by insurance due to length and frequency of the appointment. We have seen great improvements since Asher first started his outpatient therapy. Feeding therapy is also planned for the near future. 

Second, he is losing the insurance that helps cover his equipment, specifically his specialized seating. It is always a fight to get this equipment covered. If we are able to get the coverage, the ‘conveniences’ of handles to push the chair from room to room or the parts that allow the chair to raise and lower will be denied. The expense is significant.

Lastly, finding care for Asher is very important. We as parents need rest and respite.  Now that we have two children, we require two caregivers so Asher can get the special care necessary. With the loss of Medicaid, we lose the programs that pay for Asher’s current caregivers. We want to ensure that we can still employ those providing us respite and that they are well supported financially. With the lack of sleep and having a newborn in the home, we rely heavily on the extra help to survive! 

Thank you for your time and consideration to help our son meet his fullest potential.

An African proverb says, “It takes a village to raise a child”. We appreciate you being members of Asher’s community.

Thank you for your time and consideration to help our son meet his fullest potential.