Children with Diabetes

As a parent to a Type 1 Diabetic child (originally diagnosed at 3 years of age - this weekend she's turning 8 years old), I've been contemplating to write an article on raising awareness of the disease for sometime, and more importantly share the experience from pre/post-diagnosis of her illness and life beyond. Indeed my advice maybe somewhat German centric (given our current residence), however to summarise the discrimination my daughter has endured, just to try and have a "normal" life, besides living with her illness is somewhat remarkable, and I'd be more than happy to support any other parent/s whom have a similar situation - thus I hope this article resonates within my network.

Type 1 - Diabetes:

Type 1 diabetes is the most common metabolic disease in children and adolescents. The cause is an autoimmune reaction: The immune system's immune cells attack the insulin-producing beta cells in the pancreas and destroy them. If the destruction of the beta cells has exceeded a certain level, the metabolic disease becomes manifest. Due to insulin deficiency, the blood glucose levels rise. In Germany, about 30,500 children and adolescents under the age of 19 are currently affected by type 1 diabetes. The trend is increasing. (Source: https://www.dzd-ev.de/en/research/typ-1-diabetes/index.html)

My Daughter's Story:

Born in Düsseldorf in January 2012, my daughter was pronounced as a healthy baby girl, no abnormalities identified, and both mother and daughter were allowed home after a few days N.B. this in itself was a miracle, as in September 2011, our daughter was mis-diagnosed during a routine scan, as having no nose bone, meaning she would likely have down-syndrome child (something that both I and the mother were willing to accept, as she's still our child - yet the German clinic in question, constantly rang informing us that we're bringing a disabled child into the world, and have a limited time-frame to "kill it"), the diagnosis was wrong, and we were informed approximately 1 week prior to the birthdate by the Professor Doctor (Chef-Artzt) of the mistake. Somethings in life are better to forget, but clearly this put stress on the birth, and gave us limited trust in the German health system - a point which will be even more self-evident as described later on in the story.

During my daughter's 1-2 years, it was noticeable that she endured "dizzy" spells, and from being a very proud parent with having her out of nappies at 12 months, she had frequent extreme wet periods, both sweating and not being able to remain dry.

Now living in Passau, the local Child Doctors (Kinder Artzt), had more or less ignored the concern that we raised (indeed we changed Doctors 3-4 times, and by some of them were told that we were "bad parents" as we kept bringing our daughter to their practice to be re-assessed). As a long-story short, you will find that various immune tests (performed by Child Doctors) don't as standard contain any blood-sugar readings, and ironically, even the Child Clinic (Kinderklinik) that now actually treats my daughter for Diabetes, whom previously performed various preliminary head scans (EEG), also reacted by saying what were we doing there, our daughter is deemed "healthy". Conversely these institutions reacted once they saw her blood sugar readings by saying, "why did we as parents wait so long, to get medical treatment" (best for bygones to be bygones here). In short, it was a miracle, that our daughter wasn't in a diabetic coma with blood sugar at values of 700+ for a prolonged period (normal values should be 100). For reference, it was actually an elderly Nurse in the last Child Doctor's Practice, whom asked had we checked our daughter's blood sugar values, which she did for us in less than a minute - her hunch was clearly right. Although our daughter's antibodies levels (a normal way of checking for Diabetic signs) came back negative, I can only infer, if your child ever shows any of the signs/traits as illustrated above, please check the blood sugar asap.

As an aside note, whilst going through periods of despair as to why our daughter was behaving with the traits of dizziness etc., my previous in-laws actually got a local "Witch" to check my home for negative energy/spirits - I appreciate that they were willing to try anything for their Granddaughter, but for even those into "hocus pocus", save your money, this does nothing, and the show the "Witch" put on, certainly wasn't worth the hundreds they paid for. This was certainly an enlightenment and ending for me with these particular family members - to date I've still not found "Witches" in the Local Phone Directory...must be an "in-laws" specific thing...

Back to the main theme, post diagnosis, I must commend the local Child Clinic, as the staff were nothing but supportive and of course with us 24/7 whilst we were on ward for the 2+ months. Upon reflection, as a parent, the period was character building, but very rewarding in being able to understand (finally) what was wrong with my daughter, and how to simply treat/manage it. It might sound strange for others, but for me, knowing my daughter had diabetes was the biggest present I've ever got, as finally I could do something about it.

Ironically, once out of the Child Clinic, this would be what I would define as the start of the discrimination phase for our daughter. Prior to leaving the Child Clinic, parents are provided a lot of informative materials, about the rights of our daughter now she has been formally diagnosed with diabetes, and how to apply for additional support (but at the same time, being advised that "you're allowed to apply, but it's not worth it, no one ever gets this support" etc.). Obviously given our family situation (dual-citizenship etc.), we're very well appraised of how advantageous it is to have German "health benefits" vs even the UK (and especially the USA), however the bureaucratic realities in Germany mean that when you apply within the defined time-period, have the MDK (Medizinischer Dienst Krankenversicherung) come and assess that you have a 3 year old that evidentially can't administer her own medication etc., yet you're not eligible for support (based upon their standard questionnaire)....but....if you pay for a Medical Lawyer to articulate in a language that a court understands...then eventually your health insurance finally reacts and provides. In short, how sad how capitalism has taken over basic rights (and needs) for those that by defacto deserve treatment and support. In summary, this meant that our daughter received the "helpless" disability status, allowing for support in her Kindergarten, and later in school etc. N.B. This isn't a must for parents, but without it, is problematic, as I explain below.

Clearly, as parents, you try to provide your diabetic child with as normal life as possible. For our daughter, we were very fortunate in having an understanding Kindergarten, and as luck would have it, they had an ex-Child Nurse whom was trained by our Diabetes Child Clinic to support our daughter until she eventually went to school. In parallel, we were also very lucky in that the German "Medical Catalogue" (in essence a list of medical items everyone in Germany is allowed to apply for through their Health Insurance Provider) was updated to provide Continuous Glucose Monitoring - basically a sensor that periodically checks the blood sugar of our daughter and alerts if too high/low. Thus in short, our daughter had a "normal" life, but clearly the next step would be preparation for school - this is the next round of discrimination.

To put it into context, our daughter at the age of 6, could already do 10 year-old English exercises (based upon the current Bayern Education Curriculum), and as per policy, she should go to her "local" school once she leaves Kindergarten. Bizarrely, given our residence, we actually have 4 different schools to choose from (this is rare in Germany), nonetheless, once communicating with the School Directors of the various schools, 75% actually rejected our daughter as she had "diabetes" (and they didn't want to accept her as she would be a liability). Interestingly, when contacting the Schulamt and Integrationamt (the German institutions for managing School and inclusion of disabilities), the response I got was, that there is a "handicapped" institute locally to Passau. Clearly this wasn't preferential for our daughter, and frankly the German constitution is broken here, e.g. as an employee with Disabled status you have several rights pertaining to your welfare, whereas as a simple 6 year-old looking for a fundamental education, you're tagged dependent upon the related institution as handicapped!! Again to cut along story short, through a lot of discussions, and to re-commend the local Child Clinic whom actively supported in getting our daughter into a normal school, providing (freely!) education for the school, support in providing inputs to fund for having a "School Nurse" (Schul-Dienst) periodically check our daughter's blood sugar, thereby giving her, her own independence too, was both a reassurance and silver lining to the whole situation.

As a proud father, I can confirm that both last year, and now at this year's mid-year assessment point, our daughter is no.1 in her class of approximately 30 students - thus even with diabetes, she's doing fine. Hence I can only recommend for other parents in similar situations, to reach-out to your local school as early as possible, and if in worst case scenario they reject your child due to diabetes, look for the next nearest "inklusion" status school. This doesn't mean handicapped, rather a school registered to support disabled children etc. Generally, if you contact your local Child Welfare Office (Jugendamt) at the earliest possibility, based upon our experience, they were also willing to support ref logistic costs, assuming additional travel is required too.

Summary:

Today, there is more hope to finding a true cure for Type 1, with examples of individual's pancreas's having recovery treatment (assuming some beta cells are still alive), and/or transplants, as even illustrated on the BBC yesterday evening for example: https://www.bbc.co.uk/news/extra/mh9zgw7v5f/transplant to name a few.

Clearly no parent wishes to have an ill child, but knowing what is wrong with your child is a gift too, as you can take action and treat it. Although this might be stating the obvious, and regardless how mentally strong you maybe, it's natural that you'll go through a range of emotions, until you get the answers you desire - please ensure you have someone to confide in during this phase (family/friend or neutral party, doesn't matter - but someone!)

One aspect I can only re-underline, is that there's nothing more important than health (enjoy the time with your loved ones); believe me, I would certainly like to eyeball a number of incompetent health officials whom have previously treated my daughter, but this will not help my daughter now, thus save the energy, and if desired invest it in helping the greater good, in fixing fundamentals which should never even be in question, e.g. look at other G20 countries, that don't even provide sufficient affordable insulin supplies to their citizens (this is truly a crime in my book): https://www.bbc.com/news/world-us-canada-47491964

I end, by acknowledging that our story isn't in isolation, and I know within my LinkedIn network, a number of you around the globe also have Children with Type 1 Diabetes (or other chronic illnesses) - thus I finish with my opening statement, I'd be more than happy to support any other parent/s whom have a similar situation, and hope that this article gives hope that solutions can be found for our loved ones, even in the most extreme circumstances.

Best,

Adam.