Help for Remiyiah to lengthen & better her life.

Remiyiah, the most content, cheeky, happy princess we could of ever wished for. No matter what she’s going through she’s sure to give everyone a little smile.

At a 20 weeks scan our world came crashing down, Remiyiah was diagnosed with ventriulomegaly. We was referred to the fetal medicine team having weekly scans to keep a close eye on her. At a 25 week scan Remiyiahs stomach bubble was absent, they said this could be due to her oesophagus not being connected or this was because her brain wasn’t telling her to swallow and that we will have to wait until she was born to find out. Doctors were asking the worst thing any parent would want to hear. Do you want to terminate your baby? We refused and was hoping for the best, they expected her to be born and only live a few hours and maybe even days. But we stayed positive.

Our little girl arrived prematurely at 35 weeks weighing a little 3lb 3oz. She wasnt breathing but she pulled through and proved them all wrong which she has continued to do over the past year. In total she’s now had 16 surgeries, 6 of them being brain surgeries. Not all of them have gone to plan, she’s been through a lot this past year spending at least 8 months+ of her first year in hospital. Meningitis, sepsis, pneumothorax the list could go on. She has many diagnoses which haven’t been seen together before which makes this journey harder for us. There’s be several occasions when we or the doctors didn’t think we would be here with our baby girl today, she’s a little miracle and a fighter as they say.

As well as having TOF/OA Remiyiah also has Hydrocephalus and Epidermolysis Bullosa Simplex. Everyday is a blessing and we learn new things about our daughter daily. The hydrocephalus has left her with severe brain damage which we do not yet know the extent off and with a recent scan showing a cyst which is growing and two subdurals on either side of her brain.

With Remiyiahs conditions we have been told there’s a only a 50% chance she will make it to 3 years old, so time is becoming critical for us and we are running out of options. We are currently trying to work with a paediatric surgeon privately in the uk to give us some more options that will help Remiyiah and be safe for her. With anything else raised over what is needed will be used to make memories with her as a family and supply her with any equipment needed. There is also a hospital in America who specialises in TOF/OA patients which we are looking into for them to work with us.

The only way forward at this time is to go privately in the UK due to Remiyiah not being well enough to travel abroad, if this is unsuccessful the only way forward will be Boston Hospital in America.

Thank you for your support at this time.

Shay, Amber and Remiyiah x