Jaela’s Story

Site created on October 9, 2018

Jaela was born with Mucopolysaccharidosis  (MPS) 1 also known as Hurler syndrome ,  a rare genetic disorder that affects many body systems that lead to organ damage. It is caused by a mutation in the gene. She was diagnosed when she was 8months old. Jaela is now 10 years old and is a happy kid who loves to dance and sing. She has faced so much at a young age from bone marrow to chemo. She still has a tough road ahead of her but with the love and support from her family and friends Jaela will make the best of it! 
Here are some of the symptoms Jaela is or will face because of MSP 1. 
- Widely spaced teeth and large tounge (Jaela will need oral surgery soon)
- Short, broad hands 
- Knock-knees and walking on toes (Jaela does have knock-knees she will be having surgery in June 2019, she also walks on her toes at all times) 
- Thick, tough skin (which has made it hard for Dr's to find a vein when needed)

- Abnormal bones, including shortened stature and spine problems
- Heart disease
- Enlarged liver and spleen
- Joint stiffness
- Vision and hearing loss (Jaela's vision is very bad and she has loss of hearing in one ear)
- Depression - 
- Shortened lifespan 

Newest Update

Journal entry by Malisa Hernandez

We are still working with Neuro trying to figure out what the abnormality is. Since Jae's appointment in October she has had some numbness in her lower back. I had brought it to her doctor's attention so they ordered more MRI'S and an Xray. I reached out to her spine surgeon and got him involved. I requested nerve testing (thanks to a friend) the order is in so hopefully we will have some answers soon 🙏
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