Help Brianna get the life changing surgery she needs.

UPDATE

Hi everyone, 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 so today I feel would be the best time to address these

Brianna is definitely a different child since getting her peg placed and is much happier, we have also been able to enjoy 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 night and had to be taken to hospital via ambulance and today 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 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, surgeon & 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.

We couldn’t have got this far if it wasn’t for every single one of you who shared and donated 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

Hi my name is Danielle McMullan, many in our local community and wider know me & my family especially our little princess Brianna Joanne , but for those who don’t know this brave little girl she was born in 2020 with a very rare condition called Aicardi Syndrome with less than 4000 cases worldwide. She was born 5 weeks early and at only 5 days old Brianna underwent major surgery for a diaphragmatic hernia. She been through more in her short 3 years than many have been there whole life. Brianna has spent more than half her life in hospital and we hope that this surgery will let her enjoy her life more and spend more time with her family.

briannas condition effects her in many ways- she has multiple brain abnormalities and eye abnormalities which effects her sight & may never walk or talk & is unable to even sit unattended and has unfortunately had her NG feeding tube that has been keeping her alive since 2021 and has been on the waiting list since for her feeding PEG into her tummy and we have been told she could still be waiting up to 3/4 years before the NHS can provide this for her we have faced many problems since having the NG placed with continuous vomiting, feed changes, replacing her tube multiple times per week due to vomiting it up & the most heartbreaking part after getting her NG she developed a movement disorder caused by severe pain, bloating, gas & distension to the tummy. There are days we’re Brianna can’t even get out of bed to sit in her P Pod chair provided by her OT because she’s in so much pain and discomfort, we are missing out on so much of her wee life along side being able to do things together as a family with our son and Brianna. If we can raise the funds to get Brianna private care for her surgery we could eliminate so much of this by being able to vent her better and take so much pain away from our little girl.

we as a family have never asked our friends, family or strangers for a thing before. We have raised so much money over the years for charity’s very near and dear to our hearts which have been Belfast city hospital cancer ward- epilepsy society & CORPAL for aicardi syndrome.

so this time we have decided as a family that our baby needs and deserves the life that every other wee child has and that’s a happy life we’re she’s not vomiting or in severe pain everyday with her tummy and having this PEG surgery will help her so much to have that life that she deserves. Our children our suffering at the hands of the Belfast trust waiting on these types of surgery’s.

The McMullan & Millican family will forever be grateful for any small donation that could be made to help our little girl get this life changing surgery. Thank you so much for taking the time to read our beautiful girls story

we would really appreciate any shares to.