Shaw at 3 days old and at 2 years old. (And who said he may not walk or talk!?!) Shaw is not walking, he is running and defying ALL odds. He continues to amaze us every day!
Our son, the mighty Shaw Richter, was born at 27 weeks, just over two pounds and spent 122 days in the NICU.
Shaw’s medical history is long in his short 2 years of life. He suffered a stroke at birth and endured 22 spinal taps that left a permanent bruise on his backside. He had brain surgeries at 2 months old to manage the hydrocephalus (water on the brain). He has device in his brain that drains excess fluid to his abdomen. He had meningitis, subglottic stenosis and Chronic Lung Disease…
Shaw also has a narrow airway disorder, requiring multiple hospitalizations, surgeries and landing him on the ventilator and intensive care often. Shaw also has PVL, potential cerebral palsy and developmental delays. In between doctor and specialist visits, he is in intensive pediatric therapy to improve his motor skills and brain functionality. (You can read more about Shaw.)
While we adjusted to bringing home our medically-fragile son to meet his 18 month older brother, manage RSV season with a snotty toddler, learning medical equipment, scheduling doctor appointments, receiving endless tests and disappointing diagnosis, we finally began to accept that our family now is considered, “Special Needs.” Computing that alone took a long time.
What we didn’t realize until after the first year was the amount of energy, tenacity and dedication it was going to take to be an advocate for our child. While only a single income family, we are still considered to exceed Medicaid or SSI/Social Security Disability qualifications. Even with our private insurance, we will spend thousands of dollars out-of-pocket each year for critical care for our son that is not covered.
As we continue to fight for our son to receive therapies he desperately needs, we are learning there are many other families like ours that “fall through the cracks” and struggle for similar support for their children.
Here’s a link to the video if you are on mobile.
We created a non-profit foundation, Bee Mighty, which is managed by the Presbyterian Healthcare Foundation, to provide a reprieve for other families following in our footsteps. Bee Mighty provides therapy and equipment for the tiniest of warriors. Some of the therapies these babies need are not provided by insurance. Bee Mighty was established so that families can focus on each other and concentrate on the development of their child without the added stress of financial ruin. Our mission is to provide financial assistance to the parents of NICU graduates battling significant medical challenges with limited financial resources, enhancing the child’s development and quality of life.
We are ecstatic to announce that Bee Mighty funded its’ first babies in January 2013!! And the applications keep rolling in…If you know a child that may be interested in applying, please visit our website www.beemighty.org.
Thank you for your support of these precious preemies.