Living for the Momentmoment; Dedication and Love Draw Patients, Parents and Staff into One Family, Trusting in One Another, at Claire House Children's Hospice, Now Engaged in Its Biggest Fundraising Drive. David Charters Reports
Byline: David Charters
HE SPEAKS with his eyes, big brown eyes that tell you what he feels. That's the way it is these days.
There was a time, not very long ago, when he expressed himself with all the sounds of a nursery -- chattering, crying, laughing, ringing the bell on his bike.
Now Anthony Howlett is a quiet little boy, but the love which passes between him and his mother, Emma, is as strong as ever.
Of course, she remembers how it was, but she has to live with how it is -- from one morning to the next.
A degenerative disease grips her son with unrelenting cruelty. Some days, Emma wants to rage against it, asking the unanswerable questions. ``Why me? Why Anthony?''
On other days, she is sad. Whichever mood she has, there is always Claire House, the children's hospice set in woodland near Clatterbridge Hospital, Bebington, Wirral.
Emma cannot express in words the depth of her gratitude to the staff here. She trusts them absolutely. Today she is taking Anthony, six, back to their home in Bromborough after a week's respite. She lifts him to her lap while making small talk with the nurses and carers.
Anthony's condition carries the strangely cold name of Infantile Batten's Disease and it takes everything away and affects you in all sorts of ways. His big brother, Ashley, is 12 and a pupil at Wirral GrammarSchool. Emma wishes that she could give him more attention. But that's not possible.
``Anthony was diagnosed almost two years ago, '' she explains. ``It is a degenerative brain disorder which does not strike until you are three or four.
``It began with seizures. The original diagnosis was epilepsy and then other things began to go wrong. He started to lose his balance when he was walking. He started to lose his ability to speak and now he is completely wheelchair bound. He can't eat and he can't drink. It has happened in a very, very short space of time. ''
Emma, 32, now a full-time carer, remembers her son's first fit. ``He came into my bed for a cuddle in the morning. He fell asleep and I got up to have a shower. I went back to the bedroom to sort myself out. He normally woke up at that point, when I was drying my hair, but he didn't. He was ever so quiet.
``I just happened to glance over and I saw that the bed was shaking. I went over to him and he was on his side having a massive tonic-clonic (spasm).
I was terrified, absolutely terrified out of my wits. Even at that very early stage, I thought the worst.
I didn't think he was dying, but I thought there was something seriously wrong.
An ambulance took Anthony to Arrowe Park Hospital. At first he was treated for epilepsy, but in the coming months, as the seizures continued at regular intervals, the diagnosis became Batten's Disease. One fit lasted for three and a half hours.
It might have been easier for Emma if Anthony had been like that since birth, but he had been such an active little boy.
Only his smile remains. But the people at Claire House say that the most precious gift in the world is a child. Life may be long or life may be short, but you make the most of every moment given on earth.
Muriel Barber is the care manager. ``It is so very hard for the parents to see a beautiful little child as he is, '' she says. ``He talks with his eyes. You think, how can you communicate with these children, but you only have to look into their eyes and the expression on their faces. That is what we are doing as a team. You can tell whether a child has pain or whether he is happy. ''
The part of Anthony's brain which governs his digestive system no longer works properly. So the medical team here is trying to determine how much food his bowels will absorb.
``I cannot put into words the amount of thanks and gratitude that I have for Claire House.
I couldn't do without them. …