WOW, what a great organization! HESA has been there for us from the start. Since my son’s onset in 2012, HESA has published 2 amazing books offering information and hope where little information or hope is available. Susan Foley has always been such an encourager to me as a caregiver. Always encouraging me to participate and when you’re tired as a caregiver sometimes that’s challenging, but it is always such a blessing! Like one time she encouraged me to sign TJ up for a Dare to Dazzle drawing for those with rare disease. TJ won, I think every child who entered won❤️, and got the most amazing care package. It had so many wonderful things. There was a paint a plate craft kit and it turned out to be such a great gift. With acute onset disgraphia as one of TJ’s symptoms it had been a very long time since he had held a pencil or even done any activities that involved the dexterity of his hands. He brought that craft kit to his room and got to work. He began finger painting, then started using the paintbrush. It was the most amazing Christmas gift I could have ever received! It was also a turning point and as we found effective treatment art was a key factor in his healing process.
Another blessing was being asked to speak at World Encephalitis Day this year in Dallas. I didn’t get to attend as much as I would have liked to, caregiving always comes first, but the time I spent was golden. Meeting Sally Carty and Maddy and Heidi Boehme and many of the others there was such a great opportunity! And TJ enjoyed meeting others with similar experiences as well. It was great to get to share a message of hope with caregivers, survivors and the medical community.
TJ’s HE is so stubborn and as soon as we find something that works his immune system seems to find a way around it. It also has changed in presentation over the years as he has grown up and pain is now a big part of the puzzle that we are still working with his amazing team at Texas Children’s Hospital to figure out. So glad to have a team that works so hard for TJ to have his best possible life! So we keep on keeping on because quitting is not an option!
Thanks again to HESA for all you do for the HE, AE and rare disease communities!
by Angela Madden
1) TJ wearing his HESA shirt 2) Dare To Dazzle Contest 3) TJ with Kyle, an AE survivor he medt at World Encephalitis Day despite his great bouts of pain at that time