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As a Parent – Cerebral Palsy – Amal Tolba

Darah Hope AMC

If you reached this page, then let me tell you that my heart goes out to you.
I feel you and I feel your pain. But am here to tell you as painful as it seems now, It does get better and will get easier.
And there is Always Hope for a better tomorrow, but you need to pick up yourself and keep going. I understand that the pain is so strong and immense but its time to show your faith in your child ?

I am a special needs mother, for a child that was born at 40 weeks + 5 days. Full term healthy baby that suffered HIE (Hypoxic Ischemic Encephalopathy) at birth due to medical malpractice. As a result, my child has CP. Consequently, she suffered a lot of complications:

  • She was given a low life expectancy
  • Food aversion and feeding challenges
  • Reflux and gastroparesis
  • Communication Challenges
  • Physical Challenges…..

That’s just to name a few. There is no Challenge that came with CP that my child didn’t face. As hard as it sounds, It was a total blessing. I met the best people in my life on this journey that I would have never came across if it was not for my beautiful child.
There are a lot of therapies out there in the world. Although there is no magic cure, but there will be progress. Your child would amaze you.

I travelled all around the world to try various therapies and alternative therapies. We went for tube weaning programs to wean her of the peg (g Tube) and it worked. We went for various therapies around the world: Anat Baniel Method (ABM), The Feldenkrais Method, Masgutova Neurosensorimotor Integration (MNRI) Method ,The Neuro-Developmental Treatment (NDT), Bobath, Vojta, Neuro Suit, Thera Suit, Spider Gage, Universal Exercise Unit (UEU), Cuevas Medek Exercise (CME), Hyperbaric oxygen therapy (HBOT), Scalp acupuncture… just to name a few or many ?. We even went to try Stem cells therapy.

I was keen to go to the source of the treatment to the best of their availability try , discuss and ask for evidence based research and ask to be connected with other parents who has been following up on the specific method . As a result, I came across various methods, and people and my circle of connections kept growing. It came to my mind one day that this knowledge of the various techniques and specialists has a purpose. What helps my child can help other children as well and I can save the parents the effort of having to go through what I went through to get this information from east to west. I felt that I might be the answer to someone else’s prayer. I started a support group that I love dearly.

I want to share the information I have to the best of my knowledge.

If you ever as a parent want to reach out please do,

I am here for you.

We got to find our tribe and love them hard.

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