Meet Skylar! She is a fabulous young lady! She is so sweet and thoughtful all the time.
Skylar is a honors student, in Gifted and Talented program, Art lover and Squishmallow fanatic!
Skylar also battles a invisible disease. She has Type 1 Achalasia.
Achalasia is a rare disorder in which damaged nerves in your esophagus prevent it from working as it should.
In the area where your esophagus meets your stomach is a ring of muscle called the lower esophageal sphincter (LES). This muscle relaxes (opens) to allow food to go into your stomach and contracts (tightens to close) to prevent the contents from your stomach from backing up into your esophagus. If you have Achalasia, the LES muscles do not relax, making it hard for the food to pass into the stomach. Symptoms of Achalasia include swallowing difficulty (food getting "stuck"), heartburn, chest pain, weight loss, and overall
quality of life.
In 2022 Skylar started having difficulty swallowing. She dropped almost 30 pounds and was essentially starving to death and becoming so weak she couldn’t participate in activities, slept a lot, would get dizzy upon standing and was just fading away.
After many doctors appointments, a ER visit, referral to a ENT, a swallow study, referral to GI doctor, a endoscopy, a esophogram and finally a manomentry test she was diagnosed June 2023 with Achalasia.
Achalasia is very rare in children, affecting only 1 in 1 million children, that there are not any doctors or surgeons available in our area that have the knowledge or expertise.
We found a support group who guided us to Dr Kane and Dr Petrosyan at Children’s National Hospital in Washington, DC. She received her life saving surgery here on August 30, 2023. They performed a POEM (Pre-Oral Esophageal Myotomy) which is a lot less invasive, has a lot shorter recovery and is a better option for growing children. Since then she has gained her weight back and is thriving.
I’m always raising money for her next trip to DC, or any other medical needs she may need. There is no cure for Achalasia and Skylar will battle this awful disease for the rest of her life. Anything I can do to make it easier for her I will do my best!
We also would like to eventually raise money to donate to Children’s National Hospital.