12 Days of Stories: Meet Madalayna

December 6, 2021

"We wouldn't be where we are today without the help of JMCC.

Madalayna was diagnosed at 5 months old with a rare genetic disease called Malignant Infantile Osteopetrosis. This disease causes bones to become dense, which would lead to hearing loss, vision loss and ultimately take her life if she didn't receive a bone marrow transplant. We were blessed that she had a donor who saved her life but she still has many challenges that came with the disease and bone marrow transplant processes.

Madalayna was 6 months old when she recevied 9 very intense days of chemo in preparation for her transplant. During this time she started with mucositis. This is a side effect from the chemo. Most patients cannot eat with this side effect. She required an NG Tube which is the tube inserted in to her nose that goes down to her belly. She received all her feedings and medications this way for more than a year. Because of this at such a young age she lost her swallowing reflex. We could put food and liquid in her mouth but she wouldn't know what to do with it.

We also faced the challenge of her being tied to a bunch of cords in the hospital where she didn't do much but lay in the bed or be held. The doctors were not concerned with her moving that much they wanted her to not use much energy her body needed it to heal. She was very behind in most of her motor skills.

JMCC met with us almost immediately after our lengthy stays in Toronto and London. We started right way in 2017 with two wonderful ladies. Julie our Occupational Therapist and Linda our Physical Therapist. With the help of these two ladies and the support and tools given to us they helped Madalayna in leaps and bounds. 

The Nutritionist and Doctors were telling us if we could not get Madalayna to eat we would have to put a G tube in. We were lucky enough that we had Julie in our corner. She brought us special utensils and cups to help encourage her to swallow liquid and soon enough we were able to get yogurts and hummus and peanut butter down. As she got older Julie helped her with chewing and swallowing. She now eats most foods as long as they are not really hard to chew and takes her time eating. Swallow will never be an automatic reflex, we still need to remind her at times. But she eats!! We totally avoided the G tube surgery and all the medical aspects of this because of JMCC and their services.

Linda worked really hard with Madalayna as well. She is legally blind in one eye and has low vision in the other so motor skills are harder for her. Linda helped her crawl which was more of a bum scoot because of her vision. Later she learned to stand and then walk. Soon she was able to go up and down stairs safely, she was jumping and playing and we were relieved and very grateful to see our daughter doing so well.

We were discharged by Physical Therapy with the notion that if we needed it again it would be available. We still see Occupational Therapy. Madalayna is now a happy 5 year old girl who goes to school and is doing amazing for what she has been through. Most people who meet her today would never know how much help she need when she was young.

She would have a different story if we didn't have JMCC in our corner with us and we are truly grateful for their services." Madalayna's Momma Tamara Ducharme

Through the support of our donors and community partners, we are able to continue to offer the best family-centred services and support to our clients and their families, like Madalayna. Donate to JMCC today!

Thank you for supporting JMCC this holiday season!