Treatment for Emilie-Rose

 Hello, my name is Chloe and I am a mother of a 2 year old girl, Emilie-Rose.

Since Emilie-Rose was born we have fought a lot of battles. She was born head to toe in a rash with no idea of what it could be. She was investigated by many teams and had a long hospital stay. We discovered she has a condition called Incontinentia Pigmenti. This is a very rare condition with around 2000 diagnosed in the world. This condition has caused my daughter’s immune system to be weak, meaning everything she catches is a lot worse for and ends up in hospital. She's undergone laser surgery and will continue to be put under for eye examinations to ensure her cells are cleared to prevent blindness. She visits a frequent dentist every 3-4 months as she has missing teeth and cone shaped teeth, possibly ending in dentures at the age of 5. We have recently discovered she has hypermobility, another link to IP, where she can not walk far enough and her joints are very flexible meaning they could dislocate at any time. This condition can also cause her to have seizures, alopecia and muscle weakness. The life expectancy for this condition is normal unless it affects the brain too. But unfortunately Emilie-Rose was born with Pulmonary Hypertension also, which means the blood vessels in the lungs are affected. It is a serious condition that can damage the right side of your heart as it has to work a lot harder, the life expectancy isn’t normal. Emilie-Rose is 1 out of 7 people reported in the world to have both linked together, meaning doctors can not give us an answer to her how the future will be looking, due to the doctors not knowing about the IP condition, it is a learning process for everyone around her.

She faces other health problems like unsafe swallow, small airway disease and hyperthyroidism. She is currently taking 2 different medications and different creams for her skin, visiting different hospitals, Great Ormond street, Noak’s ark and 3 others.

We have managed to find a specialist but it means travelling across countries to the USA in order for them to take a good look at Emilie and be able to explain to us her future in more depth.