Meet Radha. Radha is a strong and beautiful, now almost 6-year-old, girl that has overcome many obstacles in her life.
Radha was diagnosed with Late Infantile Metachromatic Leukodystrophy (MLD) at 27 months old. Radha met all milestones as a toddler except for walking. This led to tests that later determined the presence of this very rare hereditary disease. The lysosomal storage disease affects the white matter of the brain causing loss of intellectual skills and motor skills such as walking, moving, speaking, and swallowing. There is currently no cure for MLD.
As a young child, Radha’s pediatric subspecialist always checked her development. She was hitting all her milestones and checking all of the boxes as a toddler. She was even able to pull herself up to stand, but she never transitioned from standing to taking steps and walking. Her subspecialist brought these concerns up to doctors, but the doctors just told her parents that she would be a late walker and that they should just keep watching for her to take her first steps.
15 months passed and Radha still had not progressed. She was placed in physical therapy and saw an orthopedic. No improvements were shown, and Radha still did not transition.
After making a trip to the neurologist, they were dismissive at first, but when Radha turned 2, she received a nerve conduction study and later an MRI. This was what confirmed the diagnosis.
Insurance approval took 4 weeks and was denied. The condition is so rare that no one was really expecting it. After being diagnosed, Radha and her family moved to Atlanta, Georgia because of the support the city offers to kids with such complications. Once they migrated to Georgia, they applied for the state government program, Babies Can’t Wait. Immediately after, the family applied to the KB application, GAPP, which took around 2 months of working on this every day to finally be accepted. After being accepted into the GAPP program, Radha’s family sought out ACP’s services for her home care needs.
Below are some of the questions answered by Radha’s mom –
Does ACP provide assistance?
A: “Having a home care nurse dedicated to assisting Radha’s care has been extremely beneficial. I would not be able to work if it wasn’t for having a home nurse. It helps Radha with having a variety of people to care for her and interact with. They come to work every day with such a warm heart. They treat her like she’s their family, and we try to treat our nurses like they’re our family too.”
How do you stay strong?
A: “Every person in this world has their own battle that they’re fighting, and this is ours. Radha has given us such a wealth of gratitude. She’s shown us the meaning of what it means to be thankful and helped us realize that it really is the small things in life that matter. Even if she does something that to another family may seem trivial, to us, it’s a big deal, a smile, a laugh, a giggle—her opening her mouth to accept a lollipop, that’s a huge deal, you know? And I think that we count our blessings every step of the way and we just sort of take our days in increments and focus on the here and now instead of what was and what will be. I think learning to live in the moment has been one of the things that she’s taught us the most, as well as understanding the importance of being thankful.”
What would be your message to the world?
A: “It’s hard. At the beginning, I felt so isolated.
I want to be included as much as possible and feel as normal as possible. I want this to be normalized. Inclusion.
We try to bring Radha to all of our get-togethers and outdoor activities. The more we do it, the more we get used to it. The more my friends get used to it, the more Radha gets used to it.”
Radha continues to thrive and is still a current ACP patient. We hope that the care provided by our caregivers will continue to assist her and her family in the years to come.
If you’d like to learn more about MLD, CLICK HERE to access National Organization of Rare Disorder’s MLD page.
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