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Home / Hala's Journey
When we first learned about Hypotonia, we had no idea what it meant or how it will impact our daughter’s life. It was very devastating and scary to see our child in an incubator with feeding tubes and monitors attached to her. To better understand her condition, doctors put our daughter through many agonizing tests including MRIs, CatScans, EEG, ECG, blood tests, spinal tap, physical tests, & muscle biopsy. All tests came out normal, and the final diagnosis was that she had hypotonia.
Following her diagnosis, we were overwhelmed with fear, concern and uncertainty about her future and quality of life. To deal with it, we sought out several specialists world-wide in an attempt to asses and determine how to deal with our daughter’s Hypotonia. Below is a list of the specialist we consulted with:
- Pediatric Neurologist
- Pediatric Neurosurgeon
- Pediatric Cardiologist
- Pediatric Orthopedist
Initially, our main questions were:
• Will she be able to eat?
• Will she ever sit?
• Will she ever walk?
• Will she ever talk?
• Will she be able to function cognitively?
• Will she ever develop physically?
• Will she ever be able to function independently and be self-sufficient?
Following her stay at NICU, the hospital recommended we see a neurologist. The neurologist, told us that Hala has a classic case of Spinal Muscular Atrophy (SMA), which is a very aggressive and deteriorating disease, and recommended we see a geneticist. The geneticist ran the SMA test and explained that most kids with severe cases of hypotonia like Hala’s will not make it to their 2nd birthday.
We were horrified by this news and were anxiously awaiting the results of the SMA test, which took six agonizing weeks. Luckily, Hala’s SMA test came out negative. In the midst of all of this, Hala’s Pediatrician recommend immediate physical therapy multiple times on a daily basis. Her progress initially was slow, but there seemed to be a light at the end of the tunnel.
Once all the tests came out negative and the sole diagnosis was hypotonia, we travelled back to Saudi Arabia and continued Hala’s daily physical therapy regimen. In Saudi Arabia they used a therapy called Medic therapy, which helped her significantly. Hala was able to sit without support by 9 months and walk by 17 months without going through the crawling phase. Even though she was able to sit and walk, it was clear to the observer that she had difficulty and weakness in performing those tasks, however; they were significant milestones for us and Hala. We later moved back to the US and continued with a wide range of therapies and she began to achieve several more milestones. This gave us hope for her future progress.
From our experience we learned that occupational therapy, speech therapy, and physical therapy are critical for her to overcome her muscular weakness and improve. We also learned that to see results, early intervention is crucial and we began Hala’s therapy the second day she was born and continued it to the present. Through her therapies, we have seen amazing progress and Hala was able to achieve many major milestones. We are very happy that Hala continues to improve and are able to see her grow into an independent, strong, self-reliant young lady.
It is key to start as early as possible when treating children with Hypotonia. We are extremely pleased with the outcome and success of our daughter’s progress through the therapy she is receiving and improving her life day by day. Our objective is to share our experience with parents and families of children diagnosed with hypotonia to help them better understand how to overcome it and improve their child’s life.
Ibrahim & Myriam
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This "website" www.hypotonia.org is designed to help families and users find and understand general information on certain ("hypotonia") subjects. and is designed to provide useful information in regard to hypotonia. The information guarantees neither the accuracy nor completeness , and is not intended to replace medical advice.