Help Sofia to start walking and live an independent life

On 20th of August 2019 our life changed FOREVER

Sofia is a bright, strong and intelligent 3 year old little girl who was born prematurely at 33 weeks as a result of an oversight in her ultrasound scans by the NHS. She was delivered via emergency C section at a weight of only 1580 grams. 

Due to lack of oxygen Sofia developed hypoxia and she had to be resuscitated at birth. Next day a CT scan showed a small brain haemorrhage but this didn't end here. 

The doctors missed to perform more scans to see the progress of recovery and when we were getting ready to be discharge an increased head circumference was noticed. 

After a CT scan we've been told that Sofia developed a post haemorrhage inflammation (Hydrocephalus). We felt like all our world was falling apart, we didn't know what to do and how to fix this. Everything felt like the worst nightmare. 

This ultimately resulted in another emergency, which led to a subsequent emergency brain surgery to insert an Ommaya reservoir into her brain, so that fluid can be drained manually via the means of inserting a needle into her scalp and into the Ommaya reservoir to extract excess fluid. 

Unfortunately, this option proved only a temporary measure as the fluid continued to build in her brain and manual extraction was no longer an option due to increased risk of infection around the puncture area of Ommaya reservoir.

This finally required another major and painful surgery for a more permanent solution in the form of a programmable VP (ventriculoperitoneal) shunt pump which helps to drain the extra CSF (cerebrospinal) fluid from Sofia's brain and moving it into her abdomen, where is absorbed by her body.

However, this means that Sofia has to be extremely careful around magnets, as they can adjust the flow of the pump and cause potential brain damage if accidentally adjusted.

This alone left Sofia with a significant lifestyle change, due to the number of items containing magnets in our everyday environment.  Additionally, Sofia will never be allowed to do sports or activities due to risks associated with having this device in her head.

As a result of the operations and hypoxia which were classed by professionals as severe brain damage, doctors have advised us as parents that they cannot predict the extent to which this will affect Sofia’s function.

As Sofia developed, following her surgery, she required intensive regular physical therapies as part of early intervention in order to help with the recovery from the traumas and improve chances of her standing and  walking.  Failure to perform these therapies following the surgery would essentially mean that she would be wheelchair bound for the rest of her life.  She was referred to her local community NHS care to undertake said therapies.

Unfortunately, we were left completely on our own for 15 months due to alleged clerical errors made by our GP and our local child services (NELFT) who failed to provide any kind of assistance, therapies or engagement despite our continued efforts to chase them, our allocated Health Visitor decided never to show up or to call, this ultimately resulted in Sofia developing symptoms of Cerebral Palsy.  We are carrying out our battles with our local NHS even today, due to inadequacy of care within the NHS. At 18 months, Sofia wasn't able to sit unassisted.

At our wits end with NHS care, or lack thereof, we sought private therapies in the UK and abroad in order to minimise the damage to Sofia’s muscles caused by lack of therapies.  

We maxed out our cards, borrowed money from friends and family in order to get our child well. Unfortunately, sooner or later the funds ran dry which led us to seek help from Charity to help our daughter to walk.  

Sofia has established private physio care in Croatia, who are helping her with her development, unfortunately the journeys to Croatia with disabled child is a significant financial burden and the one which we can no longer afford.  

Due to the sheer amount of medical support equipment that Sofia requires on a daily basis, flying to Croatia is not an option for us.  Therefore, the only way to transport all the equipment is via a car and remain there for an extended period of time whilst Sofia goes through intensive therapies.  A long and an expensive journey, but well worth it for the health of our child.

Sofia is working hard everyday and she is very determined to stand up and to walk, it breaks our hearts to see how she looks at other children which are walking and independent. 

Sofia cannot do this without your help!

We are so grateful for any donation, no matter how small, as any contribution will make a difference in Sofia's life!Thank you!