About - Ava S

Story Written 2018

Ava was starved of oxygen around the time of her birth. She was extremely poorly as a newborn and was rushed to intensive care for specialist treatment. Unfortunately, Ava sustained a massive brain injury and suffered lots of seizures. Her prognosis was not good, so on the advice of the hospital we switched off Ava’s life support machine and prepared for her to pass away. However, this determined little girl decided that it wasn’t her time to go and has decided to show the world just how much love and joy she can bring into everyone’s lives.

Due to the brain damage Ava has, she can’t walk, talk, swallow safely or use her body the way it was supposed to. She requires full adult support 24/7. She is fed through a gastrostomy tube into her tummy, is suctioned frequently to remove the saliva from her mouth and airways, and is oxygen dependent.

Ava has fought sepsis three times and has spent time in intensive care due to a twisted colon, which was removed and she lived with a colostomy bag for nine months before surgery successfully rejoined her bowel, and then again for a respiratory arrest.

Ava has lots of medications during the day and often uses a nebuliser to keep her lungs healthy.

Despite all of these problems, Ava is a very happy and sociable little girl who is loved by many.

Update 29th August 2026

Ava recently had an ICU stay but is now back home. The hospital say that they believe Ava is still in type 2 respiratory failure, and her future is so unknown, but despite this she currently remains well and we’ve just enjoyed a week away in Cornwall making memories.

Update 31st May 2026

Well, Ava certainly has had a very rocky six months.

Just before Christmas, she seemed very uncomfortable. She wasn’t happy in any position and was even more uncomfortable when sitting in her wheelchair, so we assumed she was experiencing another pain flare-up with her dislocated hip. How wrong were we!

In January, her tummy around the gastrostomy stoma (where her feeding tube goes into her stomach) was leaking badly, and her tummy was hard and distended.

She was admitted to our local hospital and put on IV antibiotics. She had an ultrasound which showed a build-up of fluid in the layers of the skin, so she was transferred in the middle of the night to Norfolk & Norwich Hospital for a test on her tube to make sure it wasn’t leaking into the tissue. Thankfully, it wasn’t, so she was discharged and given a course of antibiotics to finish.

That seemed to do the job. However, come February, her tummy became distended again and a huge red swelling started to track across her abdomen.

So off we went back to the hospital, where she had another ultrasound and was diagnosed with an abdominal wall abscess. She was in so much pain.

Ava was admitted to the ward and restarted on the IV antibiotics she had been on in January. She then had the abscess drained under ultrasound guidance using a needle. That was successful and, after 48 hours, we got the results back and her antibiotics were changed to two new ones.

We thought Ava would be on the home stretch then, but sadly that wasn’t the case. The abscess had recollected and grown bigger, so the decision was made to operate.

Unfortunately, due to Ava’s complex medical history and her vulnerability with her breathing, they wouldn’t put her under a general anaesthetic. Instead, she had a local anaesthetic in her tummy and an incision and drainage procedure carried out on the ward.

Her wound was packed daily and, after 14 days, she was discharged home.

The wound was looking great and the packing was going well. It had just about healed after two weeks and then, bam, the abscess had recollected, her tummy became distended again, and we were back to square one.

She was admitted for another 10 days on IV antibiotics and underwent another incision and drainage procedure, followed by more daily packing and dressing changes.

Poor Ava. Over the last 10 weeks, she’s had I don’t know how many cannulas placed, along with countless attempts at cannulas and blood tests. Her veins are so wiggly and scarred from years of trauma, yet she was so brave and barely complained at all.

She managed to get back to school for a few days before half term started and is still having her wound packed and dressed. She had an ultrasound last week which showed a small collection still present, but time will tell whether it flares up again, which we really hope it doesn’t!!

We have a busy time ahead, with Ava finishing school as she’s off to college in September, and we’re moving house during the summer holidays!

Our regular post senders have been doing a fantastic job with the happy post. The girls are so lucky to have you!

I’m so awfully sorry I don’t thank you enough, but please do know that you are amazing people and you all deserve medals for your kindness: Sarah McCulloch, Beverley and your amazing little girl, Jenny Orpwood, Alice and Poppy, Sue Stod, and Anna L.

Thank you to PostPals for the amazing balloons (and boxes!) that arrived in February, and for the Fairy Worry Kit.

And thank you to everyone who sent cards over Christmas and the New Year, to the schoolchildren and college students who wrote such lovely letters, and to anyone who has sent a drawing, painting, or gift. Every single one has been a joy to receive.

Update 30th October 2025

Things have been pretty busy for Ava over the past six months.

She has been working hard on her rolling and bench sitting in her weekly physiotherapy sessions, and has been working really hard in music therapy, playing a range of instruments. She has apparently become very good on the piano and is beginning to be very vocal, as though she is singing along.

Her health has been fairly stable. We micro manage every element of her care to keep her as healthy as we can, and that involves lots of medications, nebulisers, chest physio, and deep suctioning multiple times a day.

Surgery for her hip reconstruction was put on hold, which continues to bring its own challenges, and every now and again Ava experiences bouts of pain that have been quite disruptive to her sleep and require lots of positional changes throughout the day and night.

Ava’s spine has also deteriorated slightly due to her dystonia and rotated pelvis, so she has had a new scoliosis Lycra suit, much to her disgust – it’s definitely a love-hate relationship!

Ava is now in her final year at school. Our local schools only educate up to 16, so we are now looking at a specialist college setting for her to attend three days a week from next September.

Ava has a busy few months ahead, as she is due to transition into adult services at the hospital at the age of 16, which is hard to believe, and means lots of new doctors to meet.

Ruby is now in Year 8 at secondary school and is working really hard. She puts her all into her schoolwork and has been really proud to be a sibling ambassador for the local children’s hospice. She sets such a good example and is kind and helpful with all the siblings who attend. Ruby is also learning to play the cornet.

Millie is now in Year 1 at primary school and is also doing well. She is kind and caring towards her peers and will often go out of her way to support others with additional needs. Millie often comes across as very happy and confident but is actually really anxious, so we are trying to get some support for her and unpick what causes her to feel certain ways.

For those who supported big sister Freya previously – she too is doing absolutely amazingly! She is now in her final year at university studying Forensic Science, and we can’t believe she will be turning 21 in May!

Update 15th October 2024

Update 28th February 2024

Life for Ava has been very busy.

Over the last 12 months she has had a lot of appointments and assessments.

The biggest thing that changed for us last year was that we moved house. Ava has settled in really well to her new bedroom and can enjoy getting all around the house in her wheelchair and out into the beautiful garden we now have. She’s been loving the birds that visit.

Health wise has been a bit yo-yo. Ava now has her own chest physio vest machine which has been fantastic for keeping her lungs clear of secretions and chest infections have been much milder and treated at home and not in hospital. 

Sadly it was confirmed that after a lot of pain and reduced movement in Ava’s right leg she has a dislocated hip. Unfortunately it is a common occurrence in children with cerebral palsy and we’ve been lucky to have avoided it for so long but now it’s a wait to see if surgery will be an option to have it fixed, as Ava’s dislocation is complicated by her pelvis being twisted due to her dystonia.

Ava is also awaiting an ECG and an Echocardiogram due to some new and unusual heart decelerations during sleep. So will update on that next time.

We have been so grateful and blessed with all the lovely post that has been sent to Ava, Ruby and Millie.

I just wish there was more we could do to say how much of a positive impact each letter makes, you all do so much through your kindness.

Thank you to you all .

Update 25th August 2022

Ava’s health has been a bit like a yo-yo, up one minute, down the next. Mainly chesty respiratory infections. We’ve had a couple of hospital admissions for antibiotics and IVs which helped Ava recover.

Just recently Ava’s undergone a few tests, bloods, X-rays and other assessments as she’s been experiencing a lot of leg pain, they suspect her hip may be slipping out of the socket temporarily before returning to its normal position, so we’re awaiting an orthopaedic review.

Things at home have been a little crazy at times as most of us have been Covid positive, one at a time so it seems to have been a long 3 months with not much recovery in between, the only person not to have caught it yet is Ava which is some kind of miracle!

We’d like to send huge thanks to everyone who has sent post to our girls and supported us over the last 12 months, your cards, letters and gifts have put big smiles on everyone’s faces.

Monthly parcel senders we are hugely grateful for the kindness and commitment you make during the year, we can only apologise for not personally thanking you every time.

Update 26th March 2021

Not much has changed since our last update. Ava recovered well after the antibiotics she needed for the chest infection and remains at home waiting to hear when she can return to school. Finally had my new Lycra suit delivered so hoping that the support that provides will help straighten up my back and shoulders. Thank you for your continued support and lovely letters.

Update 19th February 2021

Ava remained well in shielding and was looking forward to returning to school in September. However, due to restrictions around AGPs and the use of suctioning in school, Ava’s return to school was delayed until November. Sadly then she developed two infections in her gastrostomy/tube feeding site on her tummy and ended up being admitted to hospital due to some complications the antibiotics had on her digestive system. 

However she recovered quickly and made it back to school on a part-time basis for two and half weeks just before the Christmas holidays, she had so much fun! 

We enjoyed a quiet Christmas at home, and thanks to going back into lockdown, Ava’s had to remain at home and recommence virtual learning with school. 

Lately, after a respite stay at the children’s hospice, we’d noticed Ava wasn’t quite herself and was needing more breathing support and chest physio to clear her secretions and test results shown that she is fighting a bacterial infection, so we’re just about to start a course of antibiotics.

We would like to say a million thank you’s for the fantastic post and gifts Ava, Ruby and Freya have received.

Your little hello’s, your wonderful letters have brought us so much happiness in such unusual and difficult times. 

Update 20th August 2020

Ava has been reasonably healthy lately. With the whole family in lockdown we were able to stop a lot of bugs coming into the house and this has had a huge benefit on Ava’s general health. 

She had a hospital admission in February where she received IV antibiotics for a chest infection. We work really hard on her chest therapy and nebuliser routine to keep her lungs as healthy as possible. 

We’ve had a few “virtual” appointments due to shielding and being in lockdown. Since restrictions have lifted, we’re still being extremely careful as Ava’s respiratory system is so vulnerable, we need to protect her as much as possible now before winter germs/viruses reappear. 

So we have exhausted our Disney DVD collection and busy ourselves at home, but when we start getting a bit claustrophobic we venture to the grandparents house and enjoy some fresh air in the safety of their garden.

Update 7th July 2020

What a strange few months we’ve had! Lockdown has been a very different experience for us all, however we’ve stayed safe and Ava has been really well.

I think the slower way of life and little exposure to every day germs has done her the world of good. It’s been quite a challenge to try to complete Ava’s care/therapy needs, along with her home schooling and her sisters homeschooling schedules too. Our days got very busy, very hectic and we felt completely overwhelmed with it all, so had to slow things down and not stress about what wasn’t finished. 

Due to shielding Ava, we were lucky to have a small garden to enjoy some sunshine and fresh air so didn’t feel completely trapped inside the house. 

We still can’t believe that our amazing girl turned 10! It was a huge milestone we never thought we would see. 

Ava celebrated with lots of Frozen 2 decorations and cake. It was a totally different day to what we had originally planned, so hopefully we can make up for it with a big party next year. Huge thanks to everyone that sent Ava a birthday card and/or gift. It’s so very thoughtful and we feel very humbled that so many people cared and sent best wishes in her direction.

I must apologise for the lack of personal thank you’s to each individual because since Ava’s birthday we welcomed a new baby girl into our family and our days have been busy on a different level. Girl number 4!! Millie Faith is adored by all her big sisters and has now completed our family. Ava spends lots of time looking, smelling and having a feel/cuddle with Millie. 

Much love and a huge thank you again to everyone who sends post in our direction. The girls really appreciate the kindness and gives them a much needed boost.

Update 27th November 2019

Ava had surgery on her tummy to remove a surgical mesh used to hold her bowels inside her abdomen (after surgery in 2016). She did absolutely amazingly well to recover so quickly after the operation, but sadly her incision opened and we’ve had to dress it daily for the last 4 weeks to get it to heal. All this time off school recovering but hoping to return back part time in December to enjoy some of the fun before Christmas holidays begin. 

A big temperature spike (20th Nov) in the middle of the night caused Ava to have a big seizure, and as predicted wouldn’t stop after her rescue medication so we had to call 999. After a fabulous check over by the paramedics and a few phone calls to the children’s ward, we were able to keep Ava home, safe in her own bed to recover, and she’s been fine since! 

We have some lovely Christmas events coming up so will let you know how those go soon!  Ava, Ruby and Freya have continued to receive such wonderful monthly projects, each gift has been perfect and you know are girls so well. 

Thank you Narelle, Amy and Tasmin for your kindness and generosity. 

Big shout out and thanks to Becky B for the continued amazing Disney postcards. They really do cheer Ava up and we love finding out what you’ve been up to. 

And to each and everyone for the continued support and love. 

Ellie E for the lovely photos of your pets, and little bits that you send each month.

Rebecca F for the most delicious hand cream.

Kayte for the handmade bracelets

Thanks you to everyone who sent Sainsbury’s cards. 

To the Girl Guides who created Ava the most incredible super hero cape and story. It was fantastic!!

Sally Plummer for Ruby’s lol watch and balloon 

Bev for Ruby’s flower fairy pot and book

Emma  for the emojis

Narelle for Ruby’s  barbies and ty beanies

Albie Lockie from NZ for the lovely letter/ origami butterfly/scratch and sniff stickers.  Ava thought it was very funny that your dog was trying to stand on her letter

Emma Hendriks from NZ for the post with Disney quotes. 

Dottie mail

You’re all amazing !!!! 

Update 1st October 2019

Thank you everyone for the continued support in the lovely post we have received recently, the excitement certainly hasn’t worn off yet! 

Extra special thanks to, Becky B, Narelle, Tasmin,  Amy, Ellie E, Geraldine, Beverley, Audrey, Tashja Victoria and to GIK for the amazing box of Disney goodies!  Dottie the Dalmation, Tales of Mr G, to those who have kindly sent Disney Pixar cards from Sainsbury’s, and M&S little shoppers, we can’t thank you enough. 

Also a massive thanks to everyone who donated for Pals to receive a Wheelchair Barbie, it’s the most played with toy this past two weeks by everyone who’s been to visit us! Ruby absolutely loves her. 

Ava’s health hasn’t been too bad, in complexly needs terms, however after a few weeks of mystery symptoms and episodes we found out that she had grown a nasty group C Streptococcus bacteria on her chest. So we’ve had to up her chest physio routine at times, and given a few courses of antibiotics, which then has consequences of its own with her already delicate bowels/ digestive system! 

Really hoping that we manage to get on top of it soon before the horrible winter germs appear and compromise her even more.

We’ve also been monitoring her abdomen scar for a couple of months as it looked like a blister had developed, her surgeon suggested at first sight that it could possibly be a stitch sinus, which is very common for people who have surgical mesh, that an internal stitch irritates from within, and that once the skin opened, could be snipped and re-healed. Simple right?! However nothing is ever that simple in Ava’s world, the area has continued to increase in size, colour and appears to almost look like the mesh is being rejected, with the skin becoming very delicate and weepy. So having to be very sterile in that area now and hoping that infection doesn’t take hold. 

Update 7th March 2019

Since joining Post Pals we have been so lucky to receive the most amazing post. Every piece is read and truly appreciated. It has made such a difference in the girls’ mental health to know people think about them and really care. I don’t think we’ve ever seen them smile so much!

Huge heartfelt thanks go to:
Becky B – your postcards are just divine.
Victoria for the Valentine’s balloons and post.
Dottie the Dalmatian for my new teddy friend we’ve named Winter and your picture updates.
Fiona and Andy for the postcards.
Narelle for the most Ava appropriate monthly parcels.
Tasmin for Ruby’s monthly parcel. We loved the pictures of your dogs Sophie and Sapphire. We have a little dog called Bruiser. He’s almost 8 years old and is a Chorkie.
Audrey you sent the most wonderful Christmas book from NZ and recent postcard.
Amy G for Freya’s monthly parcel, she’s been meaning to write a thank you back but has had a huge increase in homework since starting year 9 at school.
Emma, Geraldine, Anna, Bear Hugs and Project Parent for your post and gifts.                                                                                                                            And to everyone else I’m bound to have forgotten including scout, beaver, brownies guide and school/college groups, your post has been wonderfully uplifting.

Ava has probably had one of her best winters ever in terms of her health!
Her Dad and I have worked extremely hard on keeping her chest as healthy as possible with strict physio, antibiotic nebuliser treatment and deep suctioning routine which was a success. She remains continuously on oxygen but only on a small amount, which for winter is fantastic.
Seizures aren’t usually too troublesome for Ava, but unfortunately we had one episode of her emergency buccolam medication not stopping the seizure, so we had to call 999 and ended up with a hospital visit.
This week Ava didn’t cope very well with one of the viral infections going about so ended up with another hospital trip and course of antibiotics, but she’s recovering well.

Ava attends a local special needs school. She absolutely loves being with her peers and thrives in the classroom when well. She’s learning to communicate on an eye gaze machine that she controls with her eyes. This technology is fantastic at allowing someone who cannot control any of their body movements the chance to speak.
We’ve had many appointments over the last two months: a respiratory review with a consultant at Addenbrokes, and a physio review where Ava has been measured up for her new Lycra suit and gloves. Once wearing these items she will be known as “Ava the incredible” as she’ll look like another member of the “Incredibles” family (Disney).

Sadly we had to say goodbye to Ava’s Great-Grandad as he passed away on New Years Eve, just a few months before his 90th birthday.
Ruby too has been busy, she’s been having regular hearing tests for the past year as she has hearing loss in her left ear. She finally had her hearing aid fitted and has coped amazingly with it and it’s made such a difference in her hearing!