Our daughter, Adair, is a special little gal who recently received a rare and newly discovered genetic diagnosis through the Genetics and Genomics Program at Children’s Hospital of Wisconsin. She is seen by 13 different clinics at the Children’s Hospital of Wisconsin and has had 10 major surgeries and procedures performed at the hospital. It has been our home away from home where our daughter has received the highest level of care.
A day in the life
Having a daughter with a newly discovered genetic disorder, we had numerous friends in our rare disease community calling their legislators when the House was discussing their healthcare bill. Ordinarily, we would have been a part of that group. Instead, the day of the vote was spent like this:
Adair woke up and there was something that just seemed off, so my wife, Melissa, tested her blood sugar. It was 56, which is NOT good. We got fast acting sugars into her to bring it up rapidly. One of the major risks of low blood sugar is having a seizure, which is a fairly serious consequence of managing her hypoglycemia.
Adair was about to have major hip surgery the following Monday, so it was all hands on deck because of this blood sugar incident. We were on the phone with the endocrinologist on-call at the hospital before office hours. We spoke with Adair’s normal endocrinologist during regular hours. We spoke with urology. We spoke with the special needs clinic. We spoke with the pre-op staff — all because of low blood sugar and surgery.
We spent a ton of time trying to get a brief dental exam scheduled during her surgery as well. When your special child goes under general anesthesia, you try to schedule as many things as is safe. We already had ENT scheduled to come in and redo her ear tubes. After many phone calls and texts were made, a dear friend thankfully ensured that it would happen.
We spent an incredible amount of time talking to the special needs clinic about having something called a care conference. We wanted to get cardiology, endocrinology, genetics, dental, infectious disease, urology, and ENT all in a room together to discuss Adair. Her genetic disorder creates a bunch of complications with how these disciplines interact … and so does her hypoglycemia … and so do a few of her other complications.
Immediate needs often take precedence
It was just such an incredibly ironic day. There was this vote that dramatically impacts our lives if it ultimately becomes law, and we didn’t have a moment in our day to contact our legislators about it due to Adair’s special needs. This is what it’s sometimes like having a special family member or being a person with special needs. The immediate needs often take precedence, and all other aspects of life get put on hold.
The challenge continues, as the Senate is deliberating similar legislation, and we are once again in a situation where it is difficult to advocate for our child. Adair is in a spica cast from her armpits to her ankles because of the hip surgery, and it is daunting! The poor kid can’t play independently, she can’t get her own toys, and she wants constant attention. It’s almost impossible to get on the phone or the computer without her needing you for something.
All of this is just another day in the life of our family and so many other families like us — trying our best to raise a special little lady while doing what we can to advocate and make this world a better place for her and others like her.
– Ryan Freund, guest author
Ryan is the father of a special young lady with a rare genetic disorder. He is also a member of the Children’s Advocacy Network and the Children’s Hospital of Wisconsin Family Partner Program. He recently attended the Wisconsin Hospital Association’s advocacy day to speak on behalf of children with special health care needs.