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Diagnosis

Avaia is our little angel. I remember the day she was born and how happy we were. She was the perfect baby, cute and a bundle of joy. However, I can’t forget the day when my 4 month old baby started shaking involuntarily for what seemed like eternity. I was so scared. We rushed her to the hospital and they told us that she had suffered a seizure. This is the time when Avaia was diagnosed with spastic quadriplegic cerebral palsy. It is a developmental disorder caused by extensive brain damage or by congenital malformations in the brain. There is no treatment in conventional medicine. This news was devastating but we refused to accept that this was it for our baby girl. I searched the internet for answers and found out about stem cell therapy. It filed me with hope but it was a very expensive procedure that involved international travel! We still persevered and our community helped us raise the required funds. We met our goal through fundraisers, including barbecues, yard sales, a McDonald’s event, a concert and a golf. It took time and as avaia grew older we noticed she didn’t crawl, didn’t try to talk and had trouble eating. It got so bad that by the time she was a year and a half we had to feed her through a feeding tube.

Treatment

We arrived here and everything was ready and waiting for us. Avaia’s own cells were going to make her better! She was given anaesthesia and her bone marrow was taken early on the day of the treatment. The procedure was very short and quick. The processed cells were injected back into her spine the same day in the evening. This was the only worrisome day. After that, we stayed for 5 days so that we could learn the right physiotherapy exercises for Avaia and continue them back home. We were told not to get impatient about seeing improvemnent; it would be a slow process.

Results

6 Months after we came back, Avaia showed signs of getting better. She had trouble paying attention before. Her eyes would wander constantly. Lights attracted her attention but not her focus. Now she was looking at things and focusing on people’s faces too. She looks more alert and has started grabbing and reaching out for objects. Prior to the treatment she was unable to hold anything in her hands at all. Avaia is also trying to sit up on her own, but hasn’t mastered it yet. She has even learnt how to maintain her balance and use her hands to stop from falling over while sitting.

In therapy, Avaia used to be held up around the waist and her upper half would bend over. She can now hold up the upper half of her body. She’s been able to do it for 10 minutes at a time.

The family is hoping to go back for more treatment, it’s just a matter of money.

Children can receive a second treatment in as early as six months. It’s best to go when she’s young and her brain is still developing for the best results.

 

 

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POST TITLE: Avaia DiMarco, Cerebral Palsy

AUTHOR: Editorial Team

POSTED ON: 2nd May 2019

RELATED DISEASE: Cerebral Palsy

COMMENT FEED: RSS 2.0

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