Join Oscar's Army to help Crowland baby and his parents as he awaits brain surgery

A Crowland family are desperately trying to raise funds to help with costs so they can stay close to their seriously sick baby as he undergoes treatment in London .

Bethanie Rollings and her partner Tim Wright, were told their beautiful baby boy has a rare disorder that affects his skin, brain and eyes, just weeks after he was born last September.

Eight-month-old Oscar has Sturge-Weber Syndrome and part of the reason for the family speaking out is to raise awareness of this extremely rare condition.

His great aunt Teresa Croft from March, who is the sister of Oscar's proud grandmother Gemma Niemero, is helping the family's fundraising efforts and has helped launch a Gofundme page with Gemma.

Teresa said: "It has been absolutely awful, they are really struggling financially because of the costs of having to stay in London. The Covid-19 situation has just made everything even worse. Great Ormond Street Hospital can only accommodate one parent and so Tim has been staying in a hotel with all the costs that go with that.

"Bethanie has been unable to go back to work because Oscar needs her full-time care and he will need some specialist equipment as he grows up.

"We initially launched the fundraising to buy a special mat which would alert Bethanie and Tim when Oscar was suffering a seizure, which is a symptom of the syndrome. But they need other help on top of that just to be able to be close to their baby while he is in hospital."

Oscar was born with a large birthmark on his face and initially the first-time parents were told it was likely to be either a 'stork mark' or bruising from his traumatic birth, and it would likely disappear after a few weeks.

But not long after his birth Oscar was back in hospital for UV light treatment for jaundice and it was clear he would need tests.

Then Oscar, who lives with his parents in Crowland, started to have seizures, including one that lasted 40 minutes.

Both jaundice and seizures are common in babies with Sturge-Weber.

He has had numerous MRI scans and is on lots of medication to try to control the seizures, which are agonising for his parents to watch and has been in Great Ormond Street Hospital for three weeks, but was allowed home on Friday. But he will be back in the specialist children's hospital next week (18) when he is due to undergo brain surgery.

Oscar's condition develops as he grows, which means doctors are constantly trying having to change his medication.

Longer seizures present a risk of brain damage and complications in the future, and Oscar is already weaker on the left-hand side as a result of the fits, which means he will need physiotherapy.

Unfortunately the seizures associated with Oscar's condition are not like epilepsy where medication can keep them under-control. Instead it is a case of trying to make Oscar's seizures as few and far between as possible.

Sturge-Weber syndrome affects one in 20,000 to 50,000 individuals, according to the National Organisation for Rare Disorders.

The most apparent indication of the syndrome is a port-wine stain, or red and discoloured skin on one side of the face. The discolouration is due to dilated blood vessels in the face that make the skin appear reddened.

Not everyone with a port-wine stain has Sturge-Weber, but all children with the syndrome have a port-wine stain. A child must have the port-wine stain and abnormal blood vessels in the brain on the same side as the stain to be diagnosed with Sturge-Weber.

Some kids with Sturge-Weber will not have a seizure until a year or six months old but Bethanie said being aware and talking to parents is important in helping to know what to expect and to understand the condition.

Oscar's grandmother Gemma is a nurse, and has also taken on the role of a Body Shop agent to help earn extra cash to help with all the travelling and other costs the family are currently facing.

Teresa said: "Bethanie and Tim and all the family are so grateful to the support they have had so far, they are also really pleased that Sturge-Weber is being talked about."

To support Oscar and his family visit Gofundme - Oscar's Army.