Let’s get Avery on the move!

We are raising money for foot surgery for Avery, so that she can get the right support and begin her walking journey! Please see our story below xx
Avery was diagnosed with myelomeningocele spina bifida at our 18 week scan. During pregnancy we had many scans to monitor progress and see the development process. She was later diagnosed with congenital polydactyly meaning she had extra digits on both her hands and feet.
At 6 weeks old she had the two extra fingers and one extra toe removed and they were no more than skin and contained no bone.
The fourth digit had a bone inside which is attached at the joint of the little toe and sticks almost to right angles to the foot.
The operation to remove this should have taken place in June 2020, just before Avery's first birthday.
The placement of this small toe means that Avery cannot wear any kind of shoe. She relays on socks even through the winter.
The spina bifida means that currently Avery is unable to walk, or move independently, As Avery is almost at her second birthday. We will use a wheelchair once she outgrows her baby buggy. To aid independent movement and allow her to join in with her peers, for example at school, in the playgroup, when taking short walks, she will use a walking frame. She requires splints to keep her feet flat and to support her ankles.
The Walker is unsafe to use without footwear as they are big and heavy. Our physiotherapist will not consider ordering her one until she can wear appropriate footwear to prevent from getting hurt or getting her feet caught under the wheels. The footwear will also help to hold her splints in place, so that her feet and legs remain in the correct position for walking.
Following the pandemic, she will not be operated on in the near future, having had many discussions with the surgeon, as waiting lists for procedures have hit two and a half years and the NHS prepares for a third wave. 
Avery is due to begin her new nursery setting in September, and having had many discussions with the relevant professionals, Avery will attend a mainstream setting, which of course for us is amazing and will continue to giver her every opportunity to learn and develop both socially and academically.
We would love to see Avery using her walker as much as possible and as soon as possible so that she can be included in activities, especially sports and be able to move with her peers, in the early years and going forward to when she begins school. This will enable her to be independent in the playground and during physical education lessons. These things are also important to help with weight management, which many people with limited mobility find very difficult.

Following a recommendation from our NHS consultant, we went and saw a private consultant who can go ahead with the procedure, which I will outline in more detail below. The cost of the surgeon and her anesthetist would total around £2000, the hardest part for us is to raise the cost of the private hospital (The Portland, in central London) bed for the day which totals a massive £5000.
After much deliberation, we decided to reach out via GoFundMe, to help us to cover some of the costs, and enable us to give our little girl every opportunity, to be a part of her social peer group, to give her the independence she craves and deserves, now and in the far future.

Averys Spina Bifida comes with various issues, including damage to the lower nerves inside the spinal cord. These nerves affect her legs, although she has movement, she is currently unable to weight bear, crawl roll or walk. There is damage to the nerves which control her bladder and bowel functions, although this will affect her more later as currently she is still in nappies so very manageable now. She has hydrocephalus, a build up of fluid in one side of her brain, which is monitored yearly. She was also diagnosed with polymicrogyria, on a fetal MRI, which means one side of her brain had underdeveloped its brain folds. Currently this has not manifested to anything yet, but continues to be monitored.

Please feel free to contact me with any questions. And for even the smallest donation, we could not be more thankful.


The outline of Avery's operation includes:
Removal of extra digit and reconstruction of joint on the left foot
Removal of residual bone, left by the digit on the right foot, which went undetected at the time of skin removal
The use of extra skin removed to separate the second and third toe of the left foot, the third toe is being pulled underneath the second by webbing. Toes on the right foot are also webbed but remain flat (no overlap) and therefore we are leaving those. This part of the operation will stop undue pressure on the third toe, and as extra skin is available from the removed toe, it was understood that this should take place now rather than taking skin from elsewhere on the body later to create a skin graft.

Avery will only remain in hospital for the day, we will be able to come home the same day, providing all goes well and will return to the hospital after 7 days to redress the skin graft.