Allan Herndon Dudley Syndrome (AHDS) Awareness
Updated: Jan 30
Yesterday, October 8th was World MCT8-AHDS (Allan Herndon Dudley Syndrome) Awareness day.
Both of my younger boys (Isaiah and Josiah) have this very rare genetic syndrome. It only affects boys, however girls can be carriers of the gene, but girls don't show any symptoms.
Blood work is the primary way to confirm if your child has AHDS.
Allan Herndon Dudley Syndrome is often referred to as MCT8 because MCT8 is the name of the specific gene that is affected.
I often tell people who are curious about AHDS, that it is similar to Cerebral Palsy.
If I had to explain AHDS in one sentence, I would say 'Their brain works, but their muscles don't work properly.'
Some people are quick to assume that because the children with AHDS are unable to walk, talk or feed themselves, that their mind is just a vegetable, which couldn't be further from the truth.
Children with AHDS are very much aware of their surroundings and it becomes very clear how aware they are once you spend a few minutes with them.
They simply light up when they see someone they love! 😇💕
I personally believe that kids with AHDS have some of the Best, Most Genuine smiles and laughs in the whole wide world! 😂😂😂
They will laugh if they hear you laughing or talking sweetly to them and they will often cry or get a big lower lip if they hear yelling or someone talking in a stern voice.
Click the link below to hear just one adorable giggle from Isaiah.
Most AHDS boys LOVE music. 🎹🎼 It lights them up! 💃
Movement is another favorite activity of these precious boys. Getting to swing or go for a ride is a delight 😀
Some of the major symptoms that children with Allan Herndon Dudley Syndrome have are:
Poor muscle tone. Hyper tone (too much tone.....very rigid) as well as hypo tone (not enough tone...floppy).
Lack of head control
Difficulty gaining weight
Low T4 levels and High T3 levels (Thyroid hormones).
Low bone density
Difficulty swallowing/chewing (Most boys with AHDS can not eat by mouth and are fed via G-Tube)
Increased heart rate
Low bone density
Some of them experience seizures.
It is my prayer that one day there will be a cure for AHDS. 🙏🏻
~ If you are a parent of a special needs child, I would Love to have you in my private FB group. It is a safe environment, strictly for parents with special needs kids, where you can get the encouragement and support from other parents who can relate to what you are going through. The name of my private FB group is “Special Needs Parenting SOS.” ~ 😇💕
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