Evie's Shooting Star Appeal
£2,064 raised
110 contributors
5 Years running
Evie-Lilly is a gorgeous 8 month old baby girl. She has the biggest blue eyes and a mass of dark hair. When she was born we thought we had a baby gorilla as a daughter. She has rose bud lips and squidgy chubby cheeks. She's also severely brain ...

Evie-Lilly is a gorgeous 8 month old baby girl. She has the biggest blue eyes and a mass of dark hair. When she was born we thought we had a baby gorilla as a daughter. She has rose bud lips and squidgy chubby cheeks. She's also severely brain damaged. But we love her no less.
At 3 weeks old Evie was taken to hospital as she wasnt putting any weight on. Whilst feeding from a bottle she was out of breath and only managed half an oz every four hours. She slept constantly, she never seemed hungary and when she did drink milk would pour out the sides of her mouth. Something wasnt right. It was after two trips to the hospital the docters finally found she has a very loud heart murmer and needed to be transferred to Leeds LGI to have a heart scan. We were transferred and were told Evie had a very large Patent Ductus Arteriosus - An open duct in her heart that should have closed when she took her first breath. The huge open duct was making Evie work hard to pump blood around the body which made her breathless and tired. At the time of being in Leeds LGI heart unit, the goverment decided to suspend operations. We were told our daughter would not have her operation that was planned for the following day. In a week Evie deteriorated and had to be moved to High Dependancy Unit were she was put on a ventilator to help her breath and numerous wires and pipes that alerted the nurses when Evies sats were to low or too high. We were then transferred to Leicester Glenfield Hospital for her heart operation.
Evies heart operation to close the open duct was a huge success and that night me and my partner went out for a meal to celebrate. We had our healthy baby girl back.
The next day we walked into Intensive Care to a consultant who took us into a room. There he told us Evie had had a number of seizures over night and had to have a MRI scan of her brain as she was showing signs of abnormal behaviour like arching her back and startling a lot. The MRI results showed the worst. Evie was severely brain damaged.
Two parts of her brain was badly affected - her vision and movement. We were told her sight could range from being blind to not being able to see colours or work out shapes. Her movement would he complete paralysis to walking with a limp. The consulants could not tell us what our daughter would and wouldnt be able to do or see. That is the hardest thing to accept. I can accept our daughter is brain damaged. But i cannot accept not knowing what her future holds.
Evies brain blood vessels are very narrow and scattered. They can become easily blocked and they cannot easily pump blood and oxygen around the brain. Our little girl has had multiple strokes. One stroke happened when Evie was inside me. The others after she was born. Her brain wasnt getting enough oxygen so parts died. Once parts of the brain become damaged they never come back.
After recent scans Evies main brain vessels have started deteriorating and two main vessels have completely vanished. To compensate for this her brain has started making small flimsy vessels so she can get oxygen however this can rupture and bleed in the brain. She has two brain operations planned to try and connect vessels on the outside of her skull to the ones on the inside by drilling holes through her skull. Hopefully these vessels will attach to each other so her brain can get the oxygen it needs. Until then our daughter is a ticking time bomb. There is a high risk our little girl can have another stroke . We could wake up one morning and she could be in a coma in her cot. But to admit defeat will not help our little girl.
Evie sees a range of people - physios, occupational health, speech and language, dieticians, visual impairment, portage, community nurses, playworkers, heart consultants, neurologists, brain surgeons, gastrostemy surgeons, genetists, not to mention the regular GP and Health Vister.
Evie cannot be orally fed and has a small button on her stomach that a feeding tube connects to. This is called a gastrostemy. Her tounge is slightly lopsided which means she cannot latch onto a bottle. Our girl has also had a Nissen Fundoplication, which means her stomach has been tied to stop her vomitting. However it does have side effects like retching and choking which makes it very painful for her.
Evie also has moderate Tracheomalacia which means her cartalidge at the back of her windpipe hasnt developed correctly. As a result of this she has a prominent Stridor. This is also another reason why she cannot feed orally as it is likely it would go on her lungs.

Our princess has dealt with such a lot in her life already. She spent three and a half months in hospital. Has had three operations, with more to come in the future. We give her five syringe fulls of different medication morning and night and will be on Asprin to thin her blood for the rest of her life.
We don't want pity. We don't want people treating her or us any differently.
People have children for many reasons. When i thought of having a child i thought of her first day at school. Running out of school on her first day with a painting she drew for her mummy. I imagined her making cakes with me, decorating the christmas tree, pushing her on the swings in the park. Watching her grow, getting married having children of her own. When we were told Evie was severely brain damaged, we mourned the loss of a healthy child. Came to terms with what was to come. I may not have any of those things i dreamt of with her. It hurts to see over healthy babies, i cant help but be jelous - its only human nature. I love my daughter more than anything in the world. Brain damaged or not. I will give her the most enjoyable and happy life even if her life is short. But this is where we need YOUR help. As YOU can make a difference in our daughters life.
Evie needs special equipment to help her achieve her potential. She needs exercise for her eyes, which will make the most out of her vision. Sensory visual equipment is very expensive but would benefit Evie in so many ways.
She also needs a special car seat that swivels so i can get her in and our the car easily. The car seat also has a lot of head support which Evie needs to keep her head facing forward as the strokes have left her with her head always to one side. This is shortening the muscles in Evies neck.
The NHS unfortunatley do not provide special car seats for disabled children in our area.

So any money donated will be put towards Evies special car seat and sensory equipment. The money for this equipment would make Evie come on in leaps and bounds. Evie needs all the input we can give her to develop.

So please please please donate any money you have for our little girl to have the best chance in life. Thank You for taking the time to read this. Her Mum Danielle x

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