Help baby Aaliyah-Rose

When Aaliyah-arose was first born, she looked perfect, she was born via Caesarian section, and the surgeon was brilliant and as natural as possible, she allowed Aaliyah-Rose time to push herself out of her mummy’s tummy, giving enough time for the cord before it was clamped.. it’s was just before she was 1 hour old when things took a turn for the worse.... I shouted the midwife over as I could tell baby was struggling, then baby was taken away for hours upon hours..... we were later told that Aaliyah-Rose was retaining fluid in her lungs instead of dispersing it, she had a hole in her heart, and was having multiple seizures, she needed to be sedated and ventilated.... when she got to St Mary’s nicu she had different drs involved from genetics, neurology amongst other specialists. We were told she had a brain injury, lack of oxygen to the brain. She is now on 3 seizure medications but still having seizures, she has prolonged and cluster seizures, her hole in the heart has thankfully closed, she still struggles with her lungs, her latest mri the only thing we were told was that things were worse than they originally thought, so no definitely answer from that, she has had many blood samples taken for tests from different specialist, all tests come back negative for whatever they are looking for, she has had 4 lumber punctures, so many X-rays and scans, eegs, ecgs, we have been told she has pulmonary hypertension. She has never once cried, just a throaty Moan, she doesn’t swallow, has little to no movement within her arms and legs, it’s just every now and then she will move her arms, she can hold and grip on to our fingers though which is amazing. She has just recently found the strength to throw her head from side to side.... her eye sight is not the best, she only ever scores a 2/3 when they check her pupils, and the cerebellum has grown to small, which effects coordination and balance, and unsure on her speech, she is now on special milk as she is intolerant to formula.We have had no diagnosis what so ever, other than the picu nurse saying pulmonary hypertension, they have classed the seizures as epilepsy however say she isn’t epileptic. Generics have run out of options, they have checked for genes and both mum and dad but come back with nothing, they say she has cerebral palsy symptoms but tests were negative for CP, she has to have her secretions suctioned every 2 hours, her oxygen levels drop dangerously low, her heart stops without warning, she has been resuscitated more than 3 times already. She will be 12 weeks old on Monday. 

This post is from Aaliyah- Rose's nan. 
We are aiming to find a specialist who can give Aaliyah-Rose a proper diagnosis, but in the mean time we need some specialist equipment to keep her as comfortable as possible, and as anyone who has experienced hospital stays will be aware it is quite expensive eating in hospital cafes and paying for parking. These funds will go towards keeping both mum and baby as comfortable as possible while we hopefully find a doctor who can help us. Any funds raised and not used by the family will be donated to the hospital that have helped Aaliyah Rose. Aaliyahs parents are just a normal family, who are doing their very best to hold everything together. This could happen to any one of us and this family need your support. If you are not in a position to donate then please send your healing, love and positive thoughts to this little warrior. She has not given up so neither will we! 

If you would like to follow her or send your support please join her Facebook page Aaliyah-Rose journey. 

Thank you from the bottom of our hearts