On the 20th of August 2019, our lives changed FOREVER

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

Due to a lack of oxygen, Sofia developed hypoxia and had to be resuscitated at birth. The next day, a CT scan revealed a small brain hemorrhage, but the challenges didn’t stop there.

The doctors failed to perform further scans to monitor her recovery, and as we were preparing for discharge, an increase in head circumference was noticed.

A subsequent CT scan revealed that Sofia had developed post-hemorrhagic hydrocephalus, an inflammation caused by the bleeding. At that moment, it felt like our entire world was falling apart. We didn’t know what to do or how to fix it. It was like living through the worst nightmare.

This led to another emergency, resulting in brain surgery to insert an Ommaya reservoir into her brain, allowing fluid to be manually drained by inserting a needle into her scalp.

Unfortunately, this was only a temporary solution as the fluid continued to build, and manual extraction was no longer viable due to the increased risk of infection around the reservoir site.

This necessitated another major and painful surgery to insert a programmable VP (ventriculoperitoneal) shunt pump. This device now helps drain excess cerebrospinal fluid (CSF) from Sofia's brain into her abdomen, where it can be absorbed by her body.

However, having the shunt has significantly altered Sofia’s life. She must avoid magnets, as they can inadvertently adjust the pump’s settings, potentially causing brain damage. This has meant avoiding many everyday items and activities. Additionally, Sofia is unable to participate in sports or high-risk activities due to the risks associated with the device.

As a result of the hypoxia and surgeries, Sofia suffered severe brain damage. Doctors have informed us that they cannot predict the full extent of how this will impact her abilities in the future.

Following her surgery, Sofia required intensive physical therapy as part of early intervention to help her recover and improve her chances of standing and walking. Without these therapies, she would likely remain wheelchair-bound for life. However, despite being referred to her local NHS community care for therapy, we were left completely on our own for 15 months due to alleged clerical errors by our GP and local child services (NELFT).

Despite our repeated attempts to contact them, no assistance, therapy, or support was provided. Even our allocated Health Visitor never contacted us or showed up. This neglect ultimately led to Sofia developing symptoms of Cerebral Palsy. By the time she reached 18 months, Sofia was still unable to sit unassisted.

At our wits’ end with the NHS, we turned to private therapy both in the UK and abroad to minimize the damage caused by the lack of care. We maxed out our credit cards, borrowed money from friends and family, and did everything possible to get our daughter the help she needed. Sadly, our funds eventually ran out, leading us to seek help from charity to give Sofia a chance to walk.

Sofia now receives private physiotherapy care in Croatia, which has been instrumental in her development. However, traveling to Croatia with a disabled child is a significant financial burden we can no longer sustain. Due to the medical equipment Sofia requires daily, flying is not an option, leaving us to travel by car and stay for extended periods during her intensive therapy sessions. This is a long, costly journey, but it is essential for Sofia’s health and progress.

Sofia works hard every single day and is determined to stand and walk. It breaks our hearts to see her watching other children walking and playing independently.

Sofia cannot achieve this without your help!

We are incredibly grateful for any donation, no matter how small, as every contribution will make a difference in Sofia’s life.

Thank you from the bottom of our hearts!

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.