Hi my name Harleigh I am 2 and half years old unfortunately I was born prematurely at 37wks on the 26/08/22 but my journey started on the 22/08/22 when my mammy and daddy went for a scan @36wks and was told some devastating news my left lung had collapsed and my chest had filled up with a liquid that had moved my heart and was crushing my right lung they was so worried as we had to be transferred to a specialist hospital in Newcastle where they was told that my condition was very serious so I had to make an early appearance when I was born my mammy got to hold me for around 30 seconds before I was taken to the specialist baby unit I was but on a ventilator to breathe for me and I had a chest drain put in to help remove the fluid I was in the special incubator for 9 days before my mammy and daddy was able to have there 1st cuddles with me was was now strong enough to go to the special baby ward I was there for another 4 days before I was allowed on the ward with my mammy we had to stay in for another week before I was allowed home I was back and forth to the hospital for appointments for the 1st 6 months and all the doctors was so impressed with me on how far I had come. But then may mammy started noticing rashes all over my body after lots of tests it turned out I had lots of food allergies (wheat, gluten, fish, eggs, dairy, milk protein) so I had to have special milk this was very hard for mammy and daddy as finding foods I could eat was difficult but they was super at being creative I was doing so well the doctors couldn’t believe how everything had gone so well I celebrated my 1st birthday with all my family and friends it was amazing but just after my birthday mammy noticed I was not eating properly or taking my special milk and I was losing weight very fast then when my poo went black mammy new something was very wrong and my doggy Zeus had been acting very strange around me and wouldn’t leave my side so mammy took me to the hospital and the doctors did an Xray and discovered my chest had filled up with fluid again and collapsed my left lung and had moved my heart again I was transferred to the specialist hospital where my doctors and specialists consultants was they did lots of tests and had a meeting with my mammy and daddy and told them the devastating news that I had a very rare condition and it was life threatening I spent 5 months in hospital my mammy gave up her job to stay with me and daddy was at home look after my big sister (they came every day to see me and mammy as did nanna and other family) as they learned more about my condition it got harder for me to eat so I had to have an operation to have a (PEG) fitted to feed me as my condition progressed it was discovered that I was very unique as no one had had this they way I have it so my all my doctors got together and reached out to other specialists around the world. Soon it became very clear that I was a very special individual and specialist all around the world wanted to no more about me and my condition (so my condition doesn’t actually have a medical name but it’s very complex my whole lymphatic is broken and my body produces to much fat so I have to be on a strict specialist diet but unfortunately because of my food allergies I can’t have a lot of the food and I’m only allowed 2g of fat a day so all my food requirements are met by special dietary formulas that I have via my peg in my belly it’s very hard for my mammy daddy and sister because they try not to eat in front of me but when I was allowed home again I was so excited to see everybody especially my doggy he is my best friend but I wasn’t home for very long before I was back in hospital over the next few months I was back and forth to hospital but then in November 2024 I got really poorly again and it was my doggy Zeus that alerted my mammy and daddy so the rushed me back to hospital I was admitted and things took a very serious turn very quickly my left lung had collapsed again and my chest was filling up with fatty fluid called Chylothorax that was suffocating me I was rushed down to theatre where I had a chest drain fitted but unfortunately the fluid was so thick it kept blocking the drain and I had to keep having new ones fitted I had 6 fitted in the space of 5 weeks but on my last one unfortunately complications happened and I had to be emergency transferred to a different specialist hospital for life saving surgery’s this has put a massive strain on my family unfortunately there is no cure for my condition but all the doctors , surgeons, specialist's and scientists around the world are working hard to come up with treatments and solutions to help me live a happy safe life but financially it’s been hard on our family with travel, accommodation , and food as they have to pay for it all and still look after our home and pay all the bills it’s specially been hard for my sister as she has adhd and autism so she struggles with mammy being away so much it was especially hard over Christmas as we couldn’t all be together I would like to thank you for taking the time to read my story

Thank you Harleigh and family xxxx