How much does a chronic disorder affect a child’s life and her world of parents, school and friendships?
Type 1 diabetes is the main reason for diabetes testing in young people. More than 85% of cases occur before the age of 20. This data contains singular experiences lived by children and their families. These stories can help to deal with diabetes and all the changes it brings to everyday life.
Today, we want to share the experience of little Giada, who is close to 10 years old, through the voices of mother Stefania and father Walter.
When and how did you discover Giada’s disease?
Giada had recently turned 7 years old. Giada got up 5-6 times an hour to go to the bathroom one night. Initially, I thought it was an episode of cystitis. For our care and that of the GP, we did a glycemic diabetes test on the urine sample a couple of days later. We were immediately invited to the San Carlo Hospital to conduct a more in-depth diabetes profile. Once type 1 diabetes was diagnosed, within a few hours, we were transferred to the San Raffaele Hospital, where Giada was admitted.
During her hospital stay, we were always at her side, taking turns and giving the first lessons on correct blood sugar control.” From that day, the lives of Giada and your parents have changed… “Both habits and routines have changed a lot. We have entered into a perspective of nutrition that was unknown until then. Still, in this, we were closely followed by the doctors of San Raffaele and the SOStegno 70 Association, who organized recreational meetings to spend time together and courses to understand how the system works. The body during digestion. We still remember the words spoken by a doctor when we learned the diagnosis: we need to roll up our sleeves and face diabetes.
Giada is so strong, determined, cheerful and friendly that she amazes us daily.”
What are the biggest difficulties that Giada faces every day?
“Giada has learned to give up, not without regrets, the classic age-related snacks. Lunches have essentially remained the same as before diabetes home tests. The biggest problem arises during holidays or birthdays when it is difficult to calculate the right amount of insulin. The biggest problem for a child with diabetes is giving up sweets, even if only partially. We must admit that Giada is very good at managing this sacrifice. Giada has glycemic checks 8-9 times a day while she is at school, playing in the oratory with her friends, or at night while she is sleeping. Giada has had celiac disease since May 2011,
This food intolerance is difficult to manage in everyday life; you only get to know it better if you experience it firsthand: where to find a restaurant that cooks gluten-free products, a bakery that sells focaccia, a fresh sandwich…”
And the difficulties faced by your parents?
“We must remember to deposit requests for stock supplies in time at the local health authority to receive what is needed to manage diabetes. Certainly, the greatest difficulty is the daily battle with blood sugar.
Once you have entered the perspective of correct nutrition, you must consider the physical activity Giada can do. This varies from swimming to walking to doing nothing. These can all influence blood sugar levels.” Walter then confesses a personal problem. “While I was giving Giada insulin injections, I was afraid of hurting her. The arrival of the insulin pump in May 2012 was of enormous help because the insulin is administered directly from the device through the cannula, which is normally replaced every two or three days.”
How does the school prepare?
“The entire school made itself available in every way to help us, from the principal to the teachers. Three school employees follow Giada to measure her blood sugar before the 10.30 break. At lunchtime, an ASL nurse still measures Giada’s blood sugar level. She always has a mobile phone to tell us the values and how much insulin she has to set in the microinfusion.
The school has already faced this type of diabetes test need with a girl who is one year older and in middle school. Around 3 pm, she picked her up from school in the afternoon, and we tested her blood sugar again. Then, at 4.30 pm, school ends, and Giada does what any little girl does. We go to play sports; she loves volleyball. We go to the oratory, where she meets with friends or the gardens. It’s difficult always to fit everything together, but we try!”
Is there anything you would say or suggest to other parents?
“Diabetes is not easy to live with: one day everything is fine, the next day everything is bad. We have benefited enormously from discussion meetings with other families of children with diabetes. Doctors are always present and give fundamental advice, but the real problems emerge only when you talk to those who deal with diabetes management every day like you.
We look forward to the moment Giada can participate in the Campuses organized by the Association. This includes diabetes home test courses held by doctors so that she can understand which lifestyles are right to adopt.
We parents can only give directions. One day, they will be the ones to walk alone, growing up with one more burden than the others, but perhaps also more mature and aware. We advise other parents to talk and discuss to reduce the mistakes that will accompany us along this adventure. Giada and the other children are the protagonist heroes, and we walk alongside them.”