Molly has been sickly all of her life, she has been under so many consultants who could just not work out why she was so ill most of the time. By the age of three she had been ill roughly every 3 to 4 weeks and had recurrent pneumonia. Things did not improve after Molly started school. She missed the first reception year because she spent most of it in hospital. Throughout primary she got no better and also suffered with chronic asthma, at the time her pulmonary doctor stated her chest problems and illness were secondary to something else.

Molly was tested for Addison’s Disease in 2008, but because her adrenal glands function, her condition (Secondary Addison’s) was not picked up, Molly remained ill. She has missed most of her school life, missing out on all things other children of her age do. She was going down hill quite fast in 2012 and it was then discovered that she had adrenal insufficiency ( a life threatening condition) her thyroid was not functioning and she produced no growth hormone at all due to her pituitary not sending signals to her glandular system.

I have started an online awareness campaign called Fight for Flight to raise awareness get new research, early diagnosis and better medications, I currently have 1,634 members and have just made about 150 individual awareness posters for rare disease day for people in my group. I’m so passionate about this and need things to change. I’ve recently written to all of the ambulance trusts about protocal in the UK and have had fantastic responses. I’ll do what ever i can to prevent this happening to anyone else. Molly’s Fight for Flight is at the beginning, she still remains unwell, but we are confident that she will recover fully with all replacement meds. She is my miracle, many others are not so lucky.

Learn more about Molly and her mom, Rachel, at https://rachelpeglerartworks.wix.com/savinglives.

 

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.

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