Little Kynan & ALD Awareness

As most may know, on the 29th of June our lives were flipped upside down. Our beautiful 8-year old Kynan was diagnosed with Adrenoleukodystrophy (ALD) and I hope to raise as much awareness for this horrible disease because up until now, our family had never heard of this before.

ALD is a 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 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.

Our boy is still at the start of his journey and has many hospital visits ahead. Heart breaking enough there is no cure for ALD and our best hope is medication to slow down the progress of this disease to give him more life and us more time with him. Our family are so broken by this news, he’s the baby of our family. We pray everyday for a miracle!

I have made this fund to help with any cost towards treatment, raise awareness and just in general, as mum will be leaving work to be with Kynan.

Any donations are much appreciated, it will help our family massively. We all thank you for your support and love ❤️