LILIAN GRAHAM knows she’s different from most other children. If she ate the wrong food, it
LILIAN GRAHAM knows she’s different from most other children. If she ate the wrong food, it could kill her.
The seven-year-old suffers from anaphylaxis, an extreme and severe allergic reaction that affects the whole body and can happen within minutes of exposure to an allergen.
Symptoms include facial swelling, shortness of breath and wheezing. A swollen tongue could block her airway and lead to death.
Lilian, who lives with her mother Clare in Northfield End, Henley, is allergic to nuts, sesame, dairy products and eggs, so must avoid any food containing them.
She carries an EpiPen, an auto-injector with a single dose of epinephrine in case she suffers an anaphylactic attack and needs emergency treatment
Miss Graham, 47, says: “Attacks can kill within an hour. We have never had to use the EpiPen, touch wood, but that is because we are very careful.”
She first became aware of Lilian’s condition when she was only five months old and noticed that her face would often swell up after her cousin Isabella kissed her face.
This was because Isabella, who was then three, had been drinking a milkshake, a dairy product.
When Lilian was 10 months old she was taken to the Royal Berkshire Hospital in Reading by air ambulance after she suffering an allergic reaction.
Her mother recalls: “I thought she had a normal chest infection. We went to the doctor’s in the morning and the GP gave her antibiotics or Calpol and said to come back that evening.
“Through the day she got progressively worse. She was struggling for breath and was lifeless and clammy.
“I phoned the doctor’s and told them what was happening and they told me to call 999 straight away. I called them and I kept talking to the woman on the phone and they sent an air ambulance.
“As a parent, it was a terrifying experience but I was very controlled at the time. They asked if I wanted to carry her so I ran to the helicopter and they did what they needed to do.
“I was upset once we took off but it was a relief that there were people helping. We arrived at the hospital, handed over to the team and she recovered very quickly after that.”
Soon after this incident, Lilian was referred to Professor John Warner, a consultant paediatrician at St Mary’s Hospital in Paddington.
He diagnosed that Lilian had asthma while blood tests revealed her food allergies.
After this, Miss Graham became extra careful when shopping for food for her daughter.
“When she was first diagnosed I would spend hours readings labels and finding foods she could eat,” she recalls. “Now I’ve become used to it and so has Lilian.”
When Lilian attended Dragonflies Montessori Nursery in Norman Avenue, Henley, the children’s snacks were changed to rice cakes and raisins, which are safe for her to eat. In 2012, she started at Rupert House School in Bell Street, where the staff are helpful.
Catering manager Chris Harris cooks meals for Lilian that have been supplied by her mother and fit in with the school’s menu.
There are separate tables for milk and water and children with conditions such as anaphylaxis have different coloured trays to avoid any potential confusion at meal times.
Lilian says: “Someone asked me why my food tray was purple and I told them it’s because of my allergies. There are red, blue and green trays too.”
She carries a yellow medical bag, which has two EpiPens, an inhaler and other medication, and her friends and teachers remind her to take it with her everywhere in case she suffers an attack.
Lilian’s classmates also helped her raise £800 on last year’s Orange Wig Day, a nationwide fund-raising and awareness campaign run by the charity Anaphylaxis UK.
They will be doing it again for this year’s fund-raiser next Friday and Lilian hopes to raise £1,000 this time.
She says: “On Orange Wig Day I hand out wigs to everyone in my year. Then I get to pick some special friends to have a picture taken with me.”
Miss Graham says her daughter’s condition has become more manageable as she grows up.
“We are very careful and we have gone through everything together,” she says. “It’s the little things like labels on her water bottle that you have to remember.”
Her favourite meals are a roast dinner, pizza and, most recently, baked beans after Lilian found that pulses no longer brought her out in a rash.
Her mother says: “Last year we went tree climbing and the people there were really supportive. I saw Lilian’s face was swelling up a bit, so gave her an antihistamine and it went back to normal.
“I have never had to use the EpiPen but I am confident I will know what to do if something were to happen. The doctors said to me, ‘you will just know when to use it’.”
With her condition, foreign holidays could prove to be a challenge for Lilian but her grandparents Patricia and Barry Graham, of New Street, Henley, are able to take her to their holiday homes in South Africa and the south of France.
Miss Graham says: “We are very lucky as my parents have these houses to visit. In France they are not particularly interested in helping in restaurants but we know a couple of places that do, which is fantastic.
“In South Africa they speak English, which helps plus the amount of food available for Lilian out there is increasing.
“When we want to Disneyland we were self-catering — I think I was the only one who turned up with my own bread machine!”
Miss Graham says that despite her needs, all Lilian wants is to be treated like everyone else.
“It is tough but she is aware of people who have to live with things much worse,” she says. “This is manageable and we can keep her safe.”
A number of businesses in Henley have collection boxes in support of Lilian’s fund-raising efforts.
These are Machin’s butchers and the Health Food Store in Market Place, Marc Antoni in Hart Street and the Hot Gossip coffee house in Friday Street. There is also a box at Peppard Lawn Tennis Club.
Donations can also be made online at www.justgiving.com/Lilian-Graham