We live about 27 miles from Dover and last summer my daughter and I took George and his seven year old sister, Bethany, to France for the day. The children loved the beaches and Wendy and I loved to top up on the wine! As I was putting sun cream on George I noticed he had a lump on his wrist and another of the inside of his knee, they had certainly not been there a couple of days before. My daughter had also noticed them and took him to see our GP. He immediately sent George to see a specialist and this man, a Greek doctor, said although he had never treated a case before he recognised it as HME and it was confirmed by Great Ormond Street Hospital. The x-rays showed that in fact George had another three lumps lurking; he now has over 30. They are on his wrists, knees, knuckles, feet, ribs and shoulder blades. He calls them his "special lumps". So far he is not too troubled by them although Mr Katchburian has warned of breakers ahead. Obviously they are tender and his Mum and Dad have to be careful when picking him up, drying him after his bath and putting on creams etc. He gets very tired and by the middle of the week "achy". He is allowed to wear black trainers (NOT flashing ones) to school and the staff are aware of his condition. He is on the special needs register and the special needs teacher knows George and if and when it is necessary they will provide special pencils etc. I think he is very lucky to be a pupil at such a caring school – my daughter and son-in-law are very impressed.

As for George himself, well he is a normal boy. He loves riding his toy tractors and is happiest helping Grandad in our garden (Grandad’s work rate drops considerably) or his Daddy in their own garden.

Not so long ago George asked when he could see the sultan, puzzled we asked "what sultan"? "Oh you know, the sultan who looks at my special lumps, I like seeing him, then I can go to the toyshop". It is rather expensive visiting the "CONSULTANT" because Beth is not left out and she has a present as well. The last time George was round he reversed his tractor and trailer beautifully into a space. Grandad told him that it was a perfect piece of parking. George looked up at him and said "that was because I tried my best, I’ll tell you the golden rule, always try your best Grandad". Obviously school is having an impact.

As a family we have come to terms with HME, I think. We cannot cure it and in order to feel that we are at least doing something to help, my husband John and I have thrown ourselves into fundraising. We have a 20p moneybox, which I used to save for Christmas, but now it is for the HMESG. The landlord of our village pub has a collecting tin on his counter (in eight months he collected £65.80). We have a New Year Dance in the village and that raised over £300.00. A couple in the village cycled from Lands End to John ‘O’ Groats in July and raised £50.00. My son, George’s uncle, was married in April and he and Rebecca asked for donations for HMESG instead of wedding presents, I thought that was wonderful. Three weeks ago I had a garden lunch for my friends in Hollingbourne and held a raffle to raised a few pounds. We ended up raising £371.00 selling raffle tickets. Not only did they buy the raffle tickets, they each bought a price to be raffled (especially my lovely daughter- in-law’s father Stan). And only last night a friend at the bowling club gave me £10.00, "just because" she said.

As I write this I have tears in my eyes, partly because I love George so much, partly because I haven’t quite yet come to terms and partly because I have such wonderful friends in Hollingbourne. To them I would like to say THANK YOU ALL SO MUCH. And to any other Grannys out there who have grandchildren with HME, just be there for them and their parents and if any of them would like to contact me, my e-mail address is jg2@onetel.com.

Barbara Gibbs

HME Clinic?

Thank you to everyone who took part in the HME Clinic questionnaire. We had a tremendous response in favour of an HME Clinic.

MRSA

MRSA stands for methicillin resistant staphylococcus aureus. The term MRSA is used for any strain of staphylococcus bacteria that is resistant to one or more conventional antibiotics. Staphylococcus is a family of common bacteria. Many healthy people carry it in the back of their throats and it causes no problems.

Symptoms - All sorts of symptoms can range when MRSA is present, but it does normally depend on the part of the body infected. Infected areas are usually red with swelling and tenderness. It can affect wounds and stitches from post op patients. It can cause blood poisoning, pneumonia, impetigo, septic wounds, heart-valve infections, food poisoning and fatal toxic shock.

Becoming Infected – MRSA infection usually develops in hospitalised patients who are elderly or very sick or who have an open wound or a tube going into their body. Certain factors can put some patients at higher risk of becoming infected with MRSA, including prolonged hospital stay, receiving broad-spectrum antibiotics, being hospitalised in an intensive care or burns unit, spending time close to other patients with MRSA, having recent surgery or carrying MRSA in the nose without developing illness.

Figures reveal that cases of MRSA infection have risen from just over 1,000 in 1996 to over 7,000 last year. The latest data from the Department of Health and the Health Protection Agency show that reports of MRSA have increased by 3.6 per cent over the last year.

Treatment - Medical professionals will perhaps suggest different methods of treatment, but the treatment known best (also the treatment given to a family member of one of the members) was an antibiotic (vancomycin) given intravenously. Apparently this kind of antibiotic is very expensive and patients are usually treated in hospital.

Hygiene - Hand-washing between patients is a must for doctors and nurses to protect the most vulnerable patients from the most dangerous strains. Recently it was noted that alcohol gel was to be made available to the medical profession at each patient’s bed or at least at the doors of each ward. In some hospitals this is working well.

Prevention - Scrupulous hand-washing by hospital staff before and after contact with patients and before any procedure is the most important thing to control the infection. Patients with MRSA should be isolated in a single room, with the door remaining closed and the medical staff wearing aprons and gloves before entering the room. Finally, when such a patient is discharged from hospital, their room should be scrupulously cleaned and all linen and other clinical waste disposed of in special bags.

The Future - The number of MRSA infections reported rises year by year, and it is commonly believed that the medication used is failing as bacteria become more resistant to the antibiotics. Although new antibiotics are being developed all the time, pessimists believe that, at current rates, it is only a matter of time until virtually every option has been exhausted. For more information see www.nhsdirect.nhs.uk and search for MRSA.

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