When ten-year-old Eliana was diagnosed with Type 1 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 mum 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 completely fine in herself, but her levels were so high she was in danger of developing DKA, diabetic ketoacidosis, which can lead to organ failure.”
After five days in hospital, the doctors brought Eliana’s sugar levels down but from that moment, the pattern of life for the family was altered for ever.
“Eliana couldn’t have anything to eat or drink without us knowing the weight or amount, so we could then do a formula-based calculation of the carb value to work out the insulin needed, factoring in different ratios for different times of the day. She had to have her blood sugar level 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.
“As well as illness, so many things can affect her levels: cold, heat, excitement, nervousness, stress, hormones and more.
“All the normal things that your child takes for granted – school life, doing 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 girl and she feels frustrated by the intrusion of Diabetes in her life.”
Camp Simcha has been there to help Eliana cope with some of these feelings, providing therapeutic art sessions and ‘Big Sister’ volunteer who comes over weekly to spend time with her.
“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 I because the worry is constant.
“After a couple of years, we were able to get Eliana on an insulin pump – rather than injection pen – which makes life so much easier to enter the amount of carbs and it calculates the insulin, which can be regularly 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 our founder and Head of Family Liaison Rachely Plancey hears from most of the families with Type 1 Diabetes that we support.
“More often than not the diagnosis comes out of the blue and the family are left in a state of shock. It can be a considerable amount of time for them to get grips with their new reality, medically, practically and emotionally,” explains Rachely.
“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 1 Diabetes where we felt we could really make a difference in that initial period after diagnosis – supporting families in the short-term while they come to terms with the diagnosis and learn to manage the condition.
“In the last couple of months, we have also set up a support group for these families, which has already been a real help to parents.
“With Type 1 Diabetes we find that the same issues and questions arise – from brands of pumps to the impact of hormone changes to things like how travel affects their levels. As well as regular meetings, the families have a Whatsapp group which is a great way for parents to constantly connect with each other.
“Individual family support usually lasts for 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’ coming in to bring fun and support for the child who may be feeling very sad and isolated or for the sibling who might feel side-lined.”
Mia Bradley, from Bushey, whose son Jack, seven, was diagnosed with Type 1 Diabetes in February 2017, says Camp Simcha’s presence in their lives has mitigated the feeling of isolation that Jack’s condition brought.
“We came home from hospital after he had been diagnosed, armed with books and equipment, feeling scared and alone,” says Mrs Bradley.
“Even though you know you are not the only one, it doesn’t feel like that, but the minute Camp Simcha came into our lives we didn’t feel alone any more. Not only did we have an amazing FLO, who I could just talk to whenever I needed, but it also enabled us to meet other parents in the same situation.
“Now I feel there are so many people I can turn to. With the support group, you can have a situation where you don’t know what to do and 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 which he loves. 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 when he gets to go to a Camp Simcha event or Lola visits and he gets to feel there is an up to balance the down.”
If you know of a family who could benefit from our help or would like to hear about the Diabetes Support Group, contact us at firstname.lastname@example.org or 020 8202 9297.
We’ve had some great coverage in the press on this new support group, with an article in the JC: