The parents of a two-year-old Melton girl, who suffers regular seizures and has brain damage, are desperately trying to raise tens of thousands of pounds to pay for treatment here and abroad to help her live a healthier life.
Anika Wojciechowski has been diagnosed with Wolf-Hirschhorn syndrome and has spent a large part of her short life being treated in hospital.
She has severe epilepsy, endures up to 90 seizures a day and often requires oxygen or CPR to revive her.
Dad, Mariusz, and mum, Katarzyna, are hopeful that treatment elsewhere in Europe can ease their daughter’s condition depite being told by doctors in the UK that there is little more they can do for her other than prescribing the medication she is on.
They are hopeful that a course of growth hormone therapy and, possibly, stem cell transplantation can help her.
Mariusz told the Melton Times: “Anika needs to be watched 24/7 as nobody knows what the next seizure is going to be like.
“Her seizures are unpredictable and so one time she will need a bit of oxygen to get over it but the next time she will have a cardiac or respiratory arrest and need CPR done before an ambulance arrives.”
He added: “Every day, Anika proves how brave she is and she doesn’t give up despite everything that has happened to her.
“Last year she spent three months in intensive care, being incubated many times and having continuous doses of morphine, ketamine and many other medical agents which kept her in a pharmacological coma to stop her continuous epilepsy attacks.
“Many doctors have already given up and see no hope for her but we do continue to fight for her to get the treatment abroad which can help her.”
Anika spent the first month of her life in hospital after being born at just 34 weeks and weighing only just over three pounds.
But she developed severe epilepsy and was then diagnosed with the rare Wolf-Hirschhorn syndrome, where the symptoms are a characteristic facial appearance, delayed growth and development, intellectual disability and seizures.
Last year, she was also found to have brain damage and lost her eyesight, all speech abilities and the power in her legs and hands.
In addition, she is very delicate and easily catches a cold and infections, which also result in hospital stays.
Medical professionals did not give her any chance of survival but the couple have sought advice and they say recent initial treatment in europe has perked her up.
“Anika already feels and looks better,” said Mariusz
“She has begun to smile and, even wonderfully, laugh.
“Her fragile body is getting stronger and Anika is able to partially control the movement of her head and hands.
“What has brought such a great positive effect is only the beginning of the whole treatment, which unfortunately is expensive and requires travelling abroad.”
Mariusz and Katarzyna have used their savings and a large proportion of their earnings to fund treatment for their daughter.
They are also grateful for the £4,000 people have pledged on online fundraising pages and collection boxes in local shops.
The couple plan to visit clinics in Poland, Italy and Germany to seek treatment and their main aim is to fund growth hormone therapy for Anika, which is not available on the NHS and which costs around £10,000 just to get started on.
Mariusz added: “We are asking people to please help Anika because we know that she can have a normal life and enjoy it like other children but time is running out.”
Go to www.facebook.com/marian.wojciech.9 to pledge money for Anika’s treatment.