Skotzke Family: Diana is Dying and Family is in Crisis

The Skotzke family is in need of help: Diana is dying and our family is in crisis

We have two very disabled adult aged children, Diana (22) and David (19), who both suffer from a rare genetic disease/defect, SCN2A. David has severe autism, cognitive delays and apraxia. He has very limited expressive communication and uses an assistive technology device to communicate.

Diana has been placed on hospice at a hospital at the end of January. She started having seizures at 3, the day before Susan was supposed to go back to work as an elementary school teacher after being out on maternity leave with David. Susan has not been able to return to teaching due to the extensive needs of both Diana and David. The world lost a wonderful teacher; it was her calling.

Diana was diagnosed with Lennox-Gastaut syndrome, a severe form of epilepsy with very hard to control seizures. She was able to avoid many anti-seizure drugs and seizures through the Ketogenic diet. She had a feeding tube in her stomach when she was about 4.

A few years later, Diana was diagnosed with spastic quadriplegic cerebral palsy and, over time, she lost her ability to walk, stand, eat, talk and move any part of her body from the neck down. To address her 90- degree scoliosis she went through a very long and tough surgery to fuse nearly her entire spine.

After countless trips to the ER, calls to 911, and over two years in the hospital, with a significant portion in the ICU, Diana is nearing the end of her time with us. She has spent most of the past several months in the hospital. Her spirit is strong and she can still muster a smile that lights up a room, but her body is very frail and she is down to about 50 pounds. One of her nicknames is the “Comeback Kid”. Now, her comebacks are the moments when she opens up her beautiful eyes and is alert. We don’t know how much time she has, but we are just cherishing what little we have left with her.

As if losing our sweet daughter at only 22 years of age wasn’t bad enough, we are facing extreme financial difficulties and have to resort to creating a GoFundMe account. Any donation is greatly appreciated as we prepare to lose Diana and navigate our life without her.

We are very grateful for all who have cared for or supported us over the years with Diana and David, and for those that continue to do so. Diana would not have lived as long as she has without that care and support.

May God bless you and your loved ones and thanks again!

With gratitude,

Steve and Susan Skotzke