Kynan’s ALD fight

Kynan is such a sweet beautiful soul we had the privilege to meet a few years ago when his family moved in across the street. He was a seemingly normal young boy full of life and always wanting to have fun. In the recent years Kynan has started to regress, slowly to start with and recently much more rapidly.

Sadly last week Kynan was diagnosed with Adrenoleukodystrophy. A devastating disease that effects mainly boys and men. Adrenoleukodystrophy (uh-dree-noh-loo-koh-DIS-truh-fee) is a type of hereditary (genetic) condition that damages the membrane (myelin sheath) that insulates nerve cells in your brain.

In adrenoleukodystrophy (ALD), your body can't break down very long-chain fatty acids (VLCFAs), causing saturated VLCFAs to build up in your brain, nervous system and adrenal gland.

Childhood Cerebral ALD is the most devastating form of adrenoleukodystrophy. This form generally occurs between the ages of four and ten years old. Onset can be seen when seemingly normal, healthy boys suddenly begin to regress. At first, they may simply show minor behavioral problems, such as withdrawal or difficulty concentrating, vision problems, or start to have coordination issues. Gradually, because the disease spreads throughout the brain, their symptoms grow worse. Some symptoms could include blindness, deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to a vegetative state or death, usually within 2-5 years of diagnosis.

Kynan is still at the start of his journey and has many hospital visits ahead of him. Sadly there is no cure so the best hope is medication to slow the progress of the disease. His beautiful family are just devastated by the news as to be expected and his mum Kel has had to leave work to be with Kynan.

My goal is to raise awareness of this horrible disease as early diagnosis is the best thing and to help raise money to support his family during this time.