The quest for vision

Ten-year old Maria Munro is one of a kind; she suffers from a rare condition that affects one in a million people.

Everything was fine when she was born, but at four-and-a-half months she developed an aggressive type of glaucoma in both eyes.

Unfortunately for her and her family the condition was not detected early enough, even though her father, Hugh, had a hunch it could be glaucoma. He had read about it in a leaflet the Health Department had mailed to households and recognised some of the symptoms.

Maria's mother, Sarah, also realised something was not quite right: "I noticed she started turning her face away from the light". The family doctor was convinced something was wrong but several tests proved inconclusive. The Munros kept trying and finally it was decided to send Maria, then still a baby, to a London hospital, where the first eye specialist to see her realised what was wrong as soon as she saw her. But it was too late. The varying pressure in her eye had damaged her corneas.

Maria now has no sight in one eye and has such poor vision in the other that in England she is categorised as blind.

"We must have been to England at least 150 times. There were instances when we went for an eye test and ended up staying there for a month or two," Mrs Munro said. The staff at Great Ormond Street, Queen Victoria and Sussex hospitals as well as those who run the shop for the Royal Society for the Blind know the Munros on first name basis.

Maria has undergone countless operations and it is hoped that a corneal graft will one day restore or, at least, improve her very limited vision.

She attends St Francis School, in Cospicua, and once a week goes to a school in Qrendi where she is learning Braille.

The hardships such children endure are enormous. Apart from surgery, there were times when she had to apply eight different kinds of eye drops or ointments round the clock, allowing some time between applying one and the other.

"Before the beginning of the scholastic year, I have to get the school books for her. They are read to her and she types them out on the Braille writer so that she can follow what's going on in class.

"To be able to read, we bought her a prism costing £2,200. A Braille ruler costs £4. Maria has to use thick felt pens and very dark pencils with soft tips that need to be replaced much more often than ordinary pencils. All these come at a price," her mother said.

There are a number of aids that help blind people cope better. How can a blind person fill a glass with water or a hot drink without overfilling it? A small gadget costing £8 can be placed on the rim and it bleeps when the liquid reaches the required level.

"You'd be amazed how little things add up. It might be a small thing to speak about but two felt pens cost 80c, and they don't last long because Maria writes large letters - a sentence often takes up a whole page," Mrs Munro said.

Each time Maria needs to go for check-ups or treatment, the government pays her air fare and that of one of her parents. Treatment is free and while in hospital medicines are free or the cost is reimbursed if they are bought. But accommodation and living expenses are borne by the family.

"You live from hand to mouth while in England. Even the cheapest accommodation and food can be expensive. Anyone who has children knows that it's not easy for them to understand why they can't have something when and where they want it. Thankfully, Maria learned the value of money very early in life. When she asks for an ice cream I tell her she has to choose between that and a bar of chocolate. There are times when she asks first if we have any money before going any further.

"The problem is that we often go for a check-up and the hospital decides to carry out an operation there and then. Instead of going for three days, you end up staying for six weeks or more. I'm not ashamed to say that I take up food with me that I know is cheaper to buy here.

"Some might think it's a sort of holiday. My husband has to cope with the three other children and his job while I am away with Maria, and I do everything possible to save money. I often walk instead of taking the bus," she said.

Mrs Munro said that if she could, she would get a job too but Maria's condition does not make that possible. "Who will employ you, knowing you can tell him that next week you have to go to London and you don't know when you are coming back," she asks.

"But you have to go on in life. She's our treasure. We have to try to keep a balance between her needs and the needs of the other three children. Naturally, she gets most attention because she needs it most. We are not ashamed of talking about her and of giving her everything we have so that, maybe, she can see a bit better," her parents said.

The Munros are aware that some people with a disability do not agree that they should ask for help. "We are not ashamed to ask for help. People don't know you are in need unless you ask," they said.

Anyone who wishes to help may either deposit a donation in the Bank of Valletta account number 400 1096 3401 or contact Mrs Munro at 52 St Mary, Triq San Gwakkin, Marsascala.