Please help with headstone funds

Please help us raise enough money to be able to get little Ava-Marie a headstone for her loving family to visit her at Bushbury Crematorium ❤️

A little about Ava-Marie.!

Ava-marie was born on the 20th May 2016

She was a healthy new born until 8 weeks old when she suddenly went floppy despite numerous gp apps it wasn't until Ava-Marie became breathless in December 2016 that she was rushed to hospital where she remained fir 23days. Whilst Ava-marie was in hospital numerous test were done and shortly before her discharge from hospital Ava- Marie was diagnosed with a life limiting condition of spinal muscular atrophy type 1 (worst type) avas mum was told she may not have made her first birthday.! Heartbreaking news for any parent to hear avas mum and family stayed strong held it together for ava.. shortly after ava was discharged from hospital with numerous referrals made to 3 different hospitals. Ava-marie was also fed via a nasil gastric tube which ment she did have a safe swollow. Since avas diagnosis and discharge she was then a frequent inpatient due to having a very low immune system. Ava then had to have a sleep study at the Royal Stoke hospital and ended up being admitted due to a collapsed lung ava remained in high dependacy for 14days and was then discharged with a bipap machine which she needed whilst sleeping.! Shortly after ava started having "Grey episodes" and respiratory arrests which led to ava being intubated and ventilated and transferred to The Royal Stokes children's intensive care unit where ava then became a regular patient. Ava also spent her first birthday intubated and then spent most of 2017 in hospital it wasn't untill November of 2017 that a care package was put in place for ava to have cares 5night a week from 10pm till 7am. Gradually over time due to ava getting more sick and need 24hr care avas care package was increased to register nurses 24/7 with a carer for 12 hrs a day from February 2018!! Between February 2018 to April 2019 ava only ha a few mild admissions. On the 1st April 2019 Ava-Marie suffered a hypoxic brain injury which caused ava to lose her sight and speech and also caused ava-marie to suffer with frequent seizures.! Ava-Marie remained intubated and ventilated for 11days and was then stepped down to high dependacy and regained her sight but unfortunately never regained her speech. Since this ava started having regular seizures and was started on 2 different epilepsy medication which had to be increased quite a few times between starting them and her death... she was never diagnosed with epilepsy as that would of just been an added diagnosis which was necessary. Ava struggle with seizures and Cardiac and respiratory arrest regularly between 2019 to 2022.!

Also from June 2017 ava started a trail drug called spinraza for Spinal muscular atrophy this was give via a lumbar puncture. This was given as a loading dose day1,day 15,day 30,day 60 then every 120days after that. This continued until September 2020 ava had regular chop score to make sure the spinraza was work. In august/September of 2020 ava had a short planned hospital admission in which her chop score deceased but the doctors had already decided that they need to stop the spineaza lumbar punctures due to having having alot of damaged scar tissue and also having scoliosis which was also causing the lumbar punctures procedures to become a problem so due to all these issues the on drug ava was having for her sma had now stopped. Then ava's neuro muscular consultant built a case up on how well ava has been doing and how much she improved and on how much of a good quality of life she had and Ava was lucky enough to be given another trial drug called risdiplam which was a daily oral suspension ava Marie start this new trial on the 12th October 2020 after starting this ava Marie has was serious chest infection (which is the main side effect) in November 2020 and didn't really have many admissions after that she still had the seizures respiratory and Cardiac arrests but they never ended up being admissions and if she was the it was a couple days at most.! Ava continued the Risdiplam until May 2023 which regular chop scores from her neuro muscular team. In October 2021 Ava-Marie went on her first ever holiday to Rhyl in wales (only a caravan holiday) she made the best entrance with a cardiac arrest which resulted in 5hrs at the local hospital but then was let out to return to the caravan and continue her holiday which she thoroughly enjoyed she didn't wanna go home. She continued to have a fairly good life with regular days out shopping which she loved.!! Ava Marie also had numerous surgerys such as fundoplication2017,gastrostomy peg 2017, gastrostomy peg 2018 and portacath 2018.! Her life suddenly took a turn for the worst on Wednesday 27th April when Ava suffered a cardiac arrest and also vomited in the ambulance on the way to hospital ava Marie was then intubated and ventilated and transfered to the Royal Stoke children's intensive care unit where she remains for 29days. During her time there she had numerous test scans including an mri which confirmed a significant change to the last mri brain scan she had issues with her body temperature, heart rate, heart rhythm and seizures.. Ava Marie celebrated her 6th birthday in hospital with all of her family around her.. and then her mom had to make the hardest decision of her life that and to bring ava home to spend her last moments surrounded by her family and friends due to ava not improving and being in constant pain..

AVA-MARIE sadly passed away peacefully at home on thursday 26th May 2022 at 2pm