Call me the dwarfism and disability rights crusader for my son’s school. First, there was a call to action against a charter school placed on our campus. Then, there was a call to action for air conditioning to be placed in our area schools. Often, PTAs will send out template letters for parents to send to the school board. Instead …
BMN-111: A Family Dinner Discussion
What if you could take a pill to make your achondroplasia go away? No more risk of spinal or foramen magnum compression. The chances of central and obstructive sleep apnea would be less. And there wouldn’t be that bothersome task of finding a bike helmet to fit. Would you take that pill? If it would lessen your child’s chances of …
Cord Blood for Dwarfism Genetic Testing
When my husband and I were planning to get pregnant, there was the question of double dominancy for heterozygous dwarfism. My husband has pseudoachondroplasia and I have achondroplasia. We were told why take the risk and even TRY for children if there is a chance of health issues or being incompatible with life. And we felt, why not try? …
Eating Healthy and Having Short Arms
Soapbox Time. 😕 Please, parents! If there is one thing that you can do for your LP child (or any child): teach them to eat healthy and keep their weight down. It IS so easy for LPs to gain weight and even tougher to lose it. I’m not talking about body image. We’re talking about keeping the weight off for …
Eyeglasses for Beautiful Mid-Face Hypoplasia
A great brand that worked for a couple of the LP kids in our chapter is the Miraflex brand frames. They are high-grade rubber frames for prescription lenses for children. These frames fit well on the younger LP kids who have less of a bridge than other dwarf kids. Achons usually have more mid-face hypoplasia, which make it more difficult …