Help Sylvie-Rae to Walk! Lifechanging surgery

PLEASE HELP OUR BABY GIRL ❤️

This is our beautiful daughter Sylvie-Rae. She was born in January 2023 with a rare foot condition called Congenital Vertical Talus.

This deformity is rare but is usually related to having another condition such as Spina Bifida or neurological problems. We were told that Sylvie is such a rare case having not got a related condition and only suffering with the condition in her right foot, where usually both feet would be affected. In vertical talus, the talus bone has formed in the wrong position, and subsequently, the other bones in the foot are not lined up properly. As a result, the front of the foot points up. The bottom of the foot is stiff and has no arch — in fact, it usually curves out — and is often described as "rocker bottom." This is distinctly different than a clubfoot. Although it is not painful for her, if it is left untreated, vertical talus can lead to serious disability and discomfort later in life. We first visited the hospital when Sylvie was just 3 weeks old, and having attempted full casts it made no difference and Vertical Talus was confirmed.

We were shocked to discover this as usually it would have been picked up during an ultrasound when she was in the womb, however it was not picked up so it was a complete suprise to us when she was born. She has had multiple scans to show how deformed her foot currently is. As the deformity didn't improve with casting, the foot remains rigidly deformed, meaning the surgery will be more extensive. The goal of surgery is to correct the position of the bones within the foot. This will likely require lengthening tendons or ligaments to allow the bones to be moved. The bones are then held in place with pins and a cast. The pins will then be removed within 4 to 6 weeks. Typically she should have had the surgery at around 6 months old, so we are already in critical time and know that if left much longer will more likely affect her in later life. Following this surgery she will then require boots & bars and splints to help keep her foot in the correct position until she is at least 5. Having done our own research it is essential she has this surgery before she is two for it to not impact her too much in later life and affect her ability to walk. This surgery will be life changing for Sylvie and will completely change her future mobility. When Sylvie was a small baby the foot didn't affect her, however since recently turning one all she is trying to do is walk which she is unable to do. She can stand with assistance but not on her affected foot and we believe she is starting to be aware of other children her age being able to walk.

We as parents are desperate to get Sylvie the surgery she needs in order to give her the best outcome in life. Her livelihood shouldn't be affect by NHS waiting times however this is unfortunately our current situation. We have constantly been let down with no hope of a surgery date in the near future from the NHS despite us ringing weekly. We have since contacted The Cromwell hospital in London who has a specialist consultant who is able to perform the surgery within a matter of weeks. As both low earners we would not be able to fund the full amount for the surgery along with the travel costs to London & the Consultation fees that we have to pay in order to get Sylvie the operation she desperately needs. The amount we are asking for covers the surgery alone, we will be facing further costs as a result of her recovery. We never expected ourselves to be in this position which is why we are kindly asking for your help.