The Hyper IgM Foundation Blog

To be diagnosed with Hyper IgM Syndrome is a matter of random luck. To face the challenges this diagnosis brings with perseverance and grace is a matter of character. No one embodies perseverance like young Aaron Wolsey and his mother Chandelle. For the last four years, Aaron has faced the challenges of chronic graft vs host disease with valor. Aaron is only 6 years old, but like many other children with Hyper IgM he has spent much of his life in the hospital. After being diagnosed at age 1 following a couple of weeks in the ICU with PCP, Aaron had a hematopoietic stem cell transplant in January 2012. As we have mentioned before, a transplant is currently the only known curative treatment for Hyper IgM, but it comes with very high risks and complications. Aaron has been fighting a frightening complication of transplant, chronic graft vs host disease (cGVHD), since his first month post transplant. Over the years, his mother Chandelle has had to deal with more challenges than anyone should ever have to in a lifetime, and her little boy continues to face his journey with the utmost bravery. We are including here Chandelle’s recent post about her remarkable son and hope you can all keep them both in your thoughts and prayers as we hope for a full recovery from cGVHD and Hyper IgM.

The Amazing Kid Name Aaron, by Chandelle Wolsey

(reprinted with permission from Aaron M Wolsey’s blog)

I have no choice but to brag and give thanks!

Dancing with Squeaky Cheese (big dog)

The last few months have been rough. Aaron has been in and out of the hospital too many times to count. Three blood infections. Two surgeries and a new central line. Many, many fevers. And sores that ooze and bleed and cause a great deal of anxiety and pain. The sores are scary. Either they will heal or they won’t. If they don’t heal, the outcome is not good. Right now the sores are stable (which means they are bad but not worse). We went on a pass today to the museum and I looked down at Aaron and his shirt is soaked in blood and dripping blood. The slightest touch can cause a new tear and bleeding.

When we got back to the hospital, Aaron did not want to get in bed. He walked all around the room. He was moving pictures around on his wall. Then he turned on Pandora and started dancing. He had his doggies dancing. I told him I had to wash his bloody clothes. He insisted on coming with me and refused to let me carry him at all. The walk from the room to the laundry is outside the unit and a good lengthened walk. Then he walked the whole way back. He even teased me and purposely went the wrong way. After we got back to the room, he engaged in a full on conversation with the PCA. Anyone who knows Aaron knows that a scream and “go away” is about the best you get from him. Not today. He told the PCA all about his sister, each of his dogs, how he has an appetite from walking and on and on. I am having flashbacks to when he was two and ran a mile a day saying “I can’t stop! I can’t stop!”

Aaron’s little body is so broken and worn yet he perseveres like no other. He speaks his mind whether you like it or not and is stubborn as hell. God made this child strong. Just when I started to lose hope, Aaron renewed my strength.

—  Update 05/11/2016: Sadly, little Aaron passed away today. The world lost another little boy with Hyper IgM – a true superhero in every way. In the words of his most incredible mother Chandelle, “The doctor has said Aaron’s time has come. I would like nothing more than for everyone to celebrate his life and find a reason to laugh (he made everyone laugh). I don’t want mourning. I am the luckiest person in this entire world. I had the pleasure of having Aaron call me ‘mom.’” Aaron – a little piece of our hearts went with you yesterday . We never met in person, but you inspired us all. We are deeply sad, but incredibly grateful to have gotten to know you from afar. Your laughter, strength, and spirit has uplifted us all. We will keep fighting for superhero’s like you and your mom, who remind us that even in the midst of immense pain and suffering, there can be joy and much to celebrate.