Help Brianna get back to London for her final surgery

Hi everyone as many already know us and our story we will start from the bottom for those who don’t, Brianna is our brave little girl with a lot of severe complex needs & she’s actually 1 in 4000 with a condition called Aicardi syndrome. Brianna can’t walk or talk but she’s definitely full of sass with her very own little personality, she’s just the light of our life & she went for her much needed private surgery in September. since getting the peg feeding tube done we have been asked a lot on how is Brianna doing and also the question pops up of why are we going back and why are we still fundraising & why the need for another GoFundMe.

Brianna is definitely a different child since getting her peg placed and is much happier, we have also been able to enjoy some family days out without as much stress as she is happier throughout the day but unfortunately with Brianna we face a lot of digestion and bowel issues. With the peg what keeps Brianna alive is specialist milk and we can’t introduce anything else until it gets changed to a button. Could you imagine if you suffered these issues and all you could consume is formula we feel it’s the root cause to a lot of these problems & because of these problems Brianna took 7 cluster seizures in under 10 minutes last Wednesday & then 5 again on Sunday and both times had to be taken to hospital via ambulance and on Wednesday we made the choice to start seizure medication to try and keep her stable from these to we can get back to London again.

Why are we still fundraising and why are we going back to London ? Initially Brianna was only mint to be in Portland hospital 3 nights when we went last month but that didn’t go to plan and she was there 8 nights 3 of which was 1-1 care in PICU our target on our last GoFundMe was based on 3 nights care and travel expenses to get to and from ect. so to get Brianna back again we need to dive back into fundraising for the private hospital, surgeons & test fees and this will be the last time she needs to under go surgery for her feeding issues. We are going back again so Brianna can now be fitted with a button to which I can change myself every 3 months and we can go full swing into a real food blended diet to which will give her digestive system and bowels more variety rather than milk, unfortunately we do have to wait to she gets her button because of the peg blocks we have no means or ways to get her to theatre to change her peg, but again when she gets her button this can be changed at home

We hope to be able to raise enough to also get the added tests done this time for Brianna - endoscopy and colonoscopy which will give us more answers to see if there is any other underlaying health issues with the stomach and bowels.

on Tuesday we had to pay for another zoom call with the private gastroenterologist to be told some very devastating news that made Briannas daddy & me feel we have been well and truely failed by the Belfast trust. At only 3 days old Brianna underwent major surgery for a diaphragmatic hernia repair in the royal hospital for sick children which we were told was a success, not once were we ever told this could or would effect her in life, but gastro in London feels this have been overlooked and this could be the main reason to briannas pain she’s been suffering, pain that has now reached its highest it’s caused her seizures, we have always been very grateful that with Briannas condition she never took seizures til now and definitely feel these are not caused by her condition but rather the pain from her abdominal area and if we could get a blended diet to her life it could help so much and reduce if not take away this pain even more.

We couldn’t have got this far if it wasn’t for every single one of you who shared and donated the first time round, again the change we already see is fantastic so we can only imagine what a blended diet and these tests will do for our wee bird and to give her the full happy life she deserves to have everyday and let her get to school full time next year

I have always said under all Briannas medical conditions she’s just a little girl full of sass and a smile that would light up any room and for that I am proud to be her mammy ♥️

So we ask that we give this one more push to get princess Brianna back to London as we have no gastro team here in NI but the man we see in London is the best there is in the uk and if anyone will be able to help and give the answers we need it's him

From the bottom of our hearts we will never be able to thank you all enough.

All our love the McMullan & Millican family xx