When ten-year-old Eliana was diagnosed with type one diabetes three years ago, life changed overnight for the whole family. “Eliana had not been unwell, but she suddenly started drinking litres of water at bedtime and kept waking up to go to the toilet,” says her mother, Lisa, from Edgware. “I took her to the GP with a urine sample and a few hours later I got a call, telling me to take her straight to A&E. Her sugar level was 38 and a normal level is between four and seven. She was fine in herself, but her levels were so high she was in danger of DKA, diabetic ketoacidosis, which can lead to organ failure.”
After five days in hospital, the doctors brought Eliana’s sugar levels down but that was just the start.
“Eliana couldn’t have anything to eat or drink without us knowing the weight or amount, so we could do a calculation of the carb value to work out the insulin needed She had to have her blood sugar checked constantly — including through the night when first diagnosed. Although she is more stable now, if she’s not well or if her levels aren’t right when she goes to bed she needs an insulin correction dose and then you have to check again an hour later and so on.
“Normal things your child takes for granted — school life, exercise, parties, going to friends’ houses, sleepovers — all require careful planning. As a parent the worry has been constant, but even worse for Eliana; she just wants to be a ‘normal’ ten-year-old.”
Support by charity Camp Simcha has helped Eliana cope, providing therapeutic art sessions and a “Big Sister” volunteer who comes over weekly. Eliana adores her wonderful volunteer and she loves going on Camp Simcha outings and to parties,” says Lisa. “She also went on the winter children’s retreat, which was a real break for my husband and me. After a couple of years, we were able to get Eliana on an insulin pump, which is easier, because you enter the amount of carbs and it calculates the insulin, which can be administered via a catheter. But the catheter has to be changed every three days and Eliana finds this intrusive, momentarily painful and frustrating.”
It is a story which Rachely Plancey, Camp Simcha founder and head of family liaison, hears from most of the families with type one diabetes supported by the charity. “Often, the diagnosis comes out of the blue and the family are in shock. It can take a considerable time for them to get grips with their new reality, medically, practically and emotionally,” says Plancey.
“Camp Simcha has been supporting families coping with serious childhood illnesses for nearly 25 years but in 2015 we extended our support to conditions like type one diabetes, where we felt we could really make a difference in that initial period after diagnosis.
“We have also set up a support group for these families. As well as regular meetings, families have a Whatsapp group. Individual family support usually lasts about a year and is bespoke via their family liaison officer (FLO), ranging from professional counselling and therapeutic arts sessions to visits from our therapy dogs to our volunteer Big Brothers or Sisters, who bring fun and support for the child, who may be feeling sad and isolated, or for the sibling, who might feel sidelined.”
Mia Bradley, from Bushey, whose son Jack, seven, was diagnosed with type one diabetes last year, says: “We came home from hospital armed with books and equipment, feeling scared and alone, but the minute Camp Simcha came into our lives we didn’t feel alone any more. Not only did we have an amazing FLO, but it also enabled us to meet other parents in the same situation. Now there are so many people I can turn to. If you can have a situation where you don’t know what to do, usually another parent will have a suggestion. For Jack, the parties and outings are fantastic and he also gets visits from a Camp Simcha volunteer with her dog Lola. Jack has moments when he gets fed up and says ‘How long will I have to do this?’ or ‘When will there be a cure?’. But then he gets to go to a Camp Simcha event or Lola visits and he feels there is an up to balance the down.”
office@campsimcha.org.uk
020 8202 9297
