Alexander Disease

Hi, my name is Sunrise011. I'm here because my 14-year-old grandson was diagnosed with Alexander disease, for which presently there is no cure. Most recently, he has needed to use a wheelchair. I would like to learn how to best uplift him, cheer him up, and encourage him. I don't see him very often as we live in different parts of the country. I will visit him in a few weeks for 10 days. Any suggestions would be greatly appreciated. Also, I'm looking for something for him to read that would give him hope and ideas on how to proceed in his life with courage and enthusiasm.

#MightyTogether

This afternoon, I was doing laundry in the hospital’s Ronald McDonald room. Another mother came in to grab her laundry and we exchanged pleasantries. It was almost as if we understood each other without even knowing each other. You see, when you’ve been at the hospital long enough to be doing laundry, there’s an unspoken understanding. We each know that this road is hard. We understand the simple pleasures in life like being able to do laundry in your own home.  We exchanged stories about our children and learned that our kiddos are only a couple months apart. Her son was in for a genetic bone tumor surgery. She asked about my daughter and wanted to know more. It was nice to share a moment with a total stranger who just gets it. We understood that while our journeys are very different, the support we gave one another in that moment is what gets us through the tough days. You don’t have to know someone to show compassion and understanding. It’s truly the little ways you show you care that mean the most.

#AlexanderDisease

Last night I learned of another child passing away to Alexander disease, the same rare disease my daughter has. The child was a little younger than Jordyn. He had been admitted to the hospital and tested positive for enterovirus (the common cold) and it turned to pneumonia. Unfortunately, this is how most of our kids pass away. Alexander disease weakens the body’s ability to fight off common infections.

When my daughter was first diagnosed, she ended up having 3 seizures within a 12 hour span which required 2 ambulance calls and 2 ER visits in 12 hours. She had to be flown to St. Louis and was diagnosed with enterovirus. It caused high fevers for her which ultimately caused the seizures. We were fortunate that they didn’t cause any additional harm or time in the hospital, but that was 5 years ago.

A lot has changed with her health and I’m not confident that the outcome would be the same. With every passing year and every child that passes away, I become more and more thankful for the time we have with my daughter. I soak in all the naps and snuggles I can get and am mesmerized by the small things like her soft hands, her long beautiful eyelashes, and her smell. I also become more and more fearful as her health declines.

With every sickness comes added stress as we try to take care of of things at home and avoid a trip to the hospital. It’s a weight that is sometimes too heavy to bear and I know I must give that weight to God.

This morning in church I found myself pleading with God, begging him to save my little girl. I begged him for a cure to this horrible and devastating disease. I prayed that he would give me strength to fight and find a way to save her. I prayed for him to keep his loving hand on my baby girl and to continue to bless us for many more years. I know that only God is in control. He sees the future and only He knows our story from start to finish. I have to trust that God will protect her and give us all strength in the days and years to come.