The story of Lauren
Hello, on behalf of my 19 month old daughter Alannah I am sharing her story.
On the 6th of February 2017 Alannah was rushed into hospital due to “failure to thrive”. Being in hospital Alannah had some tests and studies done when it came to the doctors attention Alannah had a very rare lung condition.
For the first 7 months of Alannahs life I knew as a mother something was wrong. She wouldn’t eat, she wouldn’t drink, she was loosing weight, she was lethargic all the time, her eyes were red, sunken and watery, her chest was going out of shape and her breathing was horrendously fast. The doctors at our nearest children’s hospital noticed on her CT scan, X-rays and blood tests something wasn’t right. Alannah was then put on oxygen 24/7 and a year on she is still on 24/7 oxygen, she is now fed via a peg feeding tube too.
Alannah was diagnosed with “childhood” Interstitial Lung Disease, a rare form of Neuroendocrine cell hyperplasia of infancy (NEHI) we still don’t know if she will 100% grow out of her condition as it’s that rare we don’t know many outcomes of the different conditions of childhood Interstitial Lung Disease. For the foreseeable future Alannah will continue on oxygen 24/7, continue to be fed via a tube and continue with a physiotherapist to get her muscles working properly.
alannah is now 19 months old, a year later from her diagnosis and we still don’t have the answers as to why she has this condition or if it’s even cureable. She can’t walk, she can’t crawl, she can’t stand up, she’s delayed in speech and very delayed in her abilities she should have for her age.
I really hope Rare Disease awareness day opens up a lot of people’s eyes, there are so many conditions out there that are very understudied.