Personifying “Advocate Strong”, Charlene Long is the loving force behind Autism as a Whole. She joins me in this episode to talk about how many of the spectrum conditions like ADHD…like Autism, usually come with co-existing conditions. And, it is, as a whole, a person, a family, and a community are affected.
In her family’s case they have Criduchat, cancer, and mitochondria disease among others. This points to the fact that there are physical conditions that accompany psychological ones. In fact, she will tell anyone who will listen, that you can always dig deeper and not to take being turned away from the care you intuitively know your children need as their parent.
As a mother of four, Charlene’s hands would be full anyway, but her youngest, Charlie, is in palliative care with the chronic condition of Mitochondria Disease. This has led to her taking advocacy to a whole new level.
Charlene’s Awesome Quote:
“Sometimes, they really need
us to lift our our voice
and advocate strong.”
Advocate Strong
Charlene continuously has to buy Charlie nutritional supplements because he can’t tolerate solid food.
In today’s episode, I asked Charlene to come on and share her message of advocacy. I also am asking you the listener to donate to the My Hero Charlie campaign. Charlene and Charlie have 3 specific needs I think we can help her with.
1) Charlie needs nutritional supplements and supplies like syringes that aren’t covered by her insurance.
2) They need to get to Philly this fall. They finally have an appointment with a doctor they’ve been waiting to see for over a year that specializes in Mitochondria Disease, which Charlie has. They need money for gas and probably lodging.
3) A trip to the zoo or aquarium while in Philly. This will boost Charlie’s spirits and give him some incentive to go and get pricked and prodded by the doctors. Plus, who doesn’t want him to enjoy an afternoon out, after all he’s 10!
If you can help, I thank you, and so do Charlene and Charlie.
Below are links to show support as well as reach out to Charlene directly.
“Hello, as a single mom of 4, who has always tried to make everything work without asking for help, I surrender! I was told that in order to receive we have to make it known that we are in need and despite my personal pride and desire to do his on my own I know that I can’t right now. Going to work is impossible right now with Charles being so sick and everything seems to pile up. Charles has many needs and supplies that are not covered by his health insurance. He has lost his ability to maintain his bladder, mostly at night, therefore I need to have chucks handy. This is adds a lot of stress which is starting to affect my parenting skills. I have less patience than I typically have and seem to be crying a lot. I am emotionally spent! Over the Christmas season my family was blessed by some very amazing people who gave my children a Christmas to remember and also helped me get a new washer and dryer because mine was broke. I can never thank everyone enough.
I now need to ask for some community support. Chuck Cheese aka My hero Charlie, needs multiple supplements that are not covered by insurance. This happens to many families with children that suffer with Mitochondrial disease. Please consider helping to energize my baby so that maybe we can get him into school more and increase his quality of life. I miss my baby before he got sick!” ~ Charlene on My Hero Charlie
Feel free to ask Charlene any questions below or reach out to her directly from the links listed.
~ Jennie
Relevant Resources:
Follow Charlene on Facebook here or on Blab