Patient of the Month- Cleo H.

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When Cleo was about 2 months old, she was admitted to the hospital for failure to thrive (difficulty eating/maintaining weight, lethargy, low muscle tone, etc.). During our three-week stay at the hospital, pieces of her puzzle started coming together, and we received the diagnosis of hypophosphatasia, a very rare metabolic bone disorder, especially with her severity.

Overwhelmed, scared, and devastated are a few words that come to mind when I look back. Shortly after receiving her diagnosis, I learned that with cases similar to hers, the mortality rate within the first year of life was high. Much scarier if you look at the 5-year survival rates. But fortunately, Cleo was born in the years AFTER a game-changing medication (Strensiq) came to market that drastically changed the outlook of her condition, bone longevity and true quality of life.

During our stay in the hospital, we received a formal diagnosis, learned how to administer her medication by giving her shots multiple times weekly, and had a minor surgery to place a tube to help Cleo get the nutrition she needed to safely discharge her from the hospital. When we were finally released, it was my mission to learn as much as I could about her condition, how I could help her with any difficulties she was having at present or in the future, and to identify the best specialists to help her get the care she needed.

Although slow to meet most of her milestones in infancy and toddlerhood, she has met every challenge that has come her way, even if it is a unique path that got her there. Our home was full of adaptive equipment, orthotics, strollers/walkers, etc., to help her be able to interact with her environment just like her peers.

When Cleo was about four, she demanded that she start gymnastics, as she knew she would be great at it. She has been practicing in her room for weeks! I signed her up for a class, and she fell in love. It is one of my favorite things each week to sit and watch her in her gymnastics class, interacting with others her age, doing things I honestly was not sure I would see when she was two months old. Her future was so uncertain. The pride she has on her face (and after) learning a new move or skill fills my heart so much!

She is participating in new research to hopefully lessen the disease burden in others like her.

Cleo is one of the strongest and bravest people I have ever met. Not many adults can face the challenges and barriers that she does, and with a smile on their face. Blood draws in the hundreds and >700 shots to administer the life-changing medication she needs in the five short years she has been here with us. She continues to teach me new lessons every day, and I can’t wait to see what her future holds and how she will change the world as she grows. She is participating in new research to hopefully lessen the disease burden in others like her.

When Cleo was initially diagnosed with HPP, I felt so lost. I was first introduced to Soft Bones by an occupational therapist at the hospital, and sent a message out to the Public Facebook page. Within 12 hours, I was put in contact with Sue Krug. I explained a little about our situation and how my daughter was recently diagnosed. Sue quickly connected me with a fellow HPP mom, through the PaL Program, who had a kiddo about a year older than Cleo with a similar journey. It wasn’t a clear roadmap, but it was a beacon of hope, both for the glimpse of the future and that we were not alone with this rare disease. For that, I am truly forever grateful.

It has been a wonderful thing to see how much Soft Bones has grown in the last 5 years alone, expanding patient access in both adult and pediatric groups and making very great informational handouts that are easy for patients, caregivers and healthcare professionals to digest. Our family has been able to attend two National Patient Meetings so far and we hope to do many more in the future. It is so wonderful to get to connect with others who are on a similar journey, especially for kiddos to find others who are just like them.

(Cleo H. is a a member of the Hippo Squad. Learn more about this program here.)