Sunrise Foundation Diabetes Project

A few of you will have come across a FaceBook post in the Diabetes in Ireland Private Group from Debbie Davis who helps the Sunrise Foundation collect up unused and unneeded diabetes supplies such as old redundant glucose meters and test strips which are then send to underprivileged families with diabetes in Africa. I wanted to find out a little more about the Sunrise Foundation and the work that they do, so Debbie very kindly put me in touch with Matilda Chongwa the CEO. Matilda has written this week’s blog post about her foundation.

SUNRISE FOUNDATION INTERNATIONAL IRELAND.

What is the Sunrise Foundation?

My name is Matilda Chongwa. I am the CEO of Sunrise Foundation. 31 years ago, my mum was diagnosed with diabetes in Cameroon in a little village called Bali Nyonga in the North West Region of Cameroon. My siblings and I were all very young and did not know what diabetes was all about and the only thing we were told by my dad was that my mum was going to die because she was suffering from a sickness that she has to be on medication throughout her life. She was very ill and helpless in the hospital. She lost a lot of weight and she spent a whole year in the hospital. When she came out of the hospital she was always on medication and even now her life is all centred around medication and insulin.

With this in my mind, I was always thinking of ways to help my mum and others in the same situation. My mum was the first to be diagnosed with diabetes in the family and some of my aunties and uncles who were diagnosed after my mum died because they could not afford medication. Diabetes medication in Cameroon is very expensive and a lot of people cannot afford and they died on regular basis.

THE WORK OF THE SUNRISE FOUNDATION

When I came to Ireland I thought it was the right time for me to create awareness and support people with diabetes in Ireland and most especially in Africa where a lot of them are dying. The worse is that parent who cannot afford medication turn to invest on their health with the little they have and the children cannot afford education. Most children from families with diabetes cannot afford education so one of the things we do at Sunrise Foundation is education sponsorship for children from extremely poor families with diabetes in Africa.

What we have achieved so far:

• We have successfully organised so many diabetes awareness events in Ireland. Where we get Irish medical doctors to talk about diabetes
• We donated €1,000 to Diabetes Ireland.
• We donated €400 to Diabetes Mater private.
• We have also celebrated World Diabetes Day in Ireland with a Fashion show {Fashion Against Diabetes}
• We have taken Irish Diabetes Consultants, doctors, and Sunrise volunteers to Africa for free screening and awareness on Diabetes and High Blood Pressure
• We have been featured on TV and newspapers in Ireland and Africa because of our work with the Sunrise Foundation.
• We have won 4 recognition awards from creating health awareness in Ireland and Africa.
• The CEO/Founder Matilda Chongwa was recognised last year in Germany As an African Living Legend for Diaspora Engagement International, through the African Living Legend Awards. All thanks to Sunrise Foundation Diabetes project.

NEXT TRIP TO AFRICA

Our Next trip to Africa is in November and that is why Debbie Davies is collecting, medication, insulin, test trips and glucometers. I met Debbie Davies in 2015 with her daughter Caitlin Davis who had type 1 diabetes. She used to come to Diabetes awareness events organised by Sunrise Foundation and shared her life story about living with type 1 Diabetes and unfortunately, she died last year. She is greatly missed by The Sunrise Foundation Team and those she motivated with her stories and advice on how to live with Diabetes.

After her death, her lovely mother Debbie Davis decided to keep the relationship with Sunrise Foundation by organising collection of diabetes medication for Sunrise Foundation Diabetes project in Africa. We were in Nigeria in May for 12 days and all the collection were donated to St Mary's Hospital in Isolo, Nigeria. This donation was done in the presence of Dr Richard Firth who is a Diabetes Consultant in Mater Private who was the head doctor with us in Nigeria.

If you have items to donate to our next trip to Africa please contact Debbie via email davdebbie@gmail.com or Phone 085 2880489.

UPCOMING EVENT ORGANISED BY SUNRISE FOUNDATION VOLUNTEERS

We are organising the World Diabetes Fashion Show on the 4th of November at the Hilton hotel, Dublin Airport on the Malahide road.

This event is organised by the Sunrise Foundation in partnership with the Diabetes Centre Mater Private Hospital. We would like to invite you all to come and share the day with other people with diabetes who will be sharing their stories and celebrating the World Diabetes Day. We are also looking for volunteers to travel with the team or who want to share their life story to help others.

Sunrise Foundation Contact Details:

• Matilda Chongwa
• Phone: 083 1644110
• Email: info@sunrisefoundation.ie
• Sunrise Foundation International Ireland Facebook Page
• Website http://sunrisefoundation.ie/
• Instagram is sunrise_foundation
• Supplies and Medical donations to: Debbie Davis davdebbie@gmail.com or 0752880489

Run Rebecca Run!!!

You have to have a little bit of crazy in this world to make it fun. At the end of October, In 5 weeks, a whole lot of crazy will be unleashed on Dublin City for the annual Dublin City Marathon. I know a couple of these people!?! My amazing cousin Sinead who is doing her… I've lost count but she raises a nice chunk of change for a number of very deserving charities. And this year Thriveabetes cofounder, Rebecca Flanagan is going to Take on An actual Marathon for Thriveabetes!!!! Because, you know, life with diabetes is a marathon, not a sprint;-)

Rebecca is a d-mum and a d-daughter. She works a full time job disguised as a part time, plus a part time job, plus Mum to three girls from 8 - 17 years. She runs the country roads around Doolin, Co Clare to keep her sanity, which goes completely against what I said earlier. Not surprisingly, Rebecca had to take a back seat with Thriveabetes after 2016 but remains a dedicated supporter.

I asked her to wrtie about why Thriveabetes is so important to her and why she has chosen to take on the Dublin city marathon to raise funds for Thriveabetes. Please help her spread the word to her friends and extended family to dig deep by share this post and in particular her fundraising link - Run Rebecca Run Donation Page

Here’s what Rebecca has put together about why she is doing this.

Most everyone who knows me will know that raising awareness and funds for Type 1 diabetes is a cause close to my heart. Hailey, my eldest of 3 daughters, is now 17 and has been living with Type 1 diabetes since before her 8th birthday - a condition she will have the rest of her life. Countless finger-prick blood tests and insulin injections have been part of her life since then, not to mention the emotional side of dealing with a long term illness. If you're not sure what Type 1 diabetes is or would like to learn more, please have a look at www.diabetes.ie.

When my friend, Grainne, who I'd known in the diabetes community for awhile (and is an amazing person with Type 1 herself!), had an idea to start a national conference for adults with Type 1 and parents of children with Type 1, I jumped on board immediately. There is nothing like this in Ireland. The inaugural Thriveabetes Conference was held in October 2015 and was an astounding success. The support we all received from each other, along with the amazing insight and knowledge of the international speakers, left us all with a feeling of not being alone in any struggle we might be dealing with or might encounter with Type 1 diabetes. It also meant we, the organizers, had to do it again. And we did, bigger and better in October 2016, including a children and teen programs.

This conference has grown to be a wonderful way for this community to connect and we've made so many truly amazing friendships in the last few years. Did I mention that the conference is fully organized by volunteers?! Thriveabetes 2018 is set for 24 February and we need your help to make this happen. I've had to take a step back from the organizing committee this year due to personal reasons, but I still want to help out as best I know how - which is to raise some money!

I'll be running the Dublin Marathon in October and my training is going well so far - I've completed a 15 mile run and haven't died, so... YAY! I'm being ambitious with my target but I know how generous all my friends, family and the entire diabetes community are, so please help out as best you can. Any little donation at all will do.

From all of us at Thriveabetes - THANK YOU!

Please support Rebecca's fundraising page, link underneath or share this post.

Rebecca's Fundraising Link.

A Diabetes Mother's Call

You might remember a while back that I posted about being part of a Diabetes Ireland delegation to attend a diabetes briefing for TD’s and Senators in Leinster House. My friends, Rebecca and Davina both gave powerful and emotional speeches to our audience about life with type 1 diabetes. I asked Rebecca if I could shared hers on Thriveabetes and she was game. Rebecca is also one of my partners in crime in organising Thriveabetes :-) Here are her words;

My name is Rebecca Flanagan, I live in Co. Clare and I have 3 daughters, the eldest of which has Type 1 Diabetes. She was diagnosed just before her 8th birthday and, at 16 years old now, has lived with this auto-immune condition for 8 years – a condition she will have for the rest of her life. This was the start of our whole family’s ‘new’ normal. This new normal for my daughter now involves a minimum of 4 finger prick blood sugar tests and a minimum of 4 insulin injections every day in order to stay alive. EVERY DAY!

Part of the new normal for our family was figuring out the insulin dose based on the amount of carbohydrates she would be eating, but it’s not a perfect science and so many variables can contribute to her care. Additional testing may be required for stressful times, like the students taking exams right now; anxiety, exercise, sickness. As parents we became our child’s nurse and doctor, hoping we had been given the proper training to keep our child healthy.

Time off work must be organized to attend hospital appointments, schools must be cooperative, and her siblings sometimes have to take a back seat. Middle of the night blood sugar tests often have to be done. There are times that the whole family becomes exhausted and burnt out.

But I know I’m not alone in this life with type 1 diabetes. There are about 3,000 families in Ireland trying to manage this balancing act with a type 1 child in Ireland. Some children are only babies at diagnosis – imagine trying to count the carbohydrates and a correct insulin dose for an infant, when it’s hard to tell how much even makes it past their mouth. Imagine trying to get a toddler to finish their dinner because they already had their insulin, and if they don’t they are in danger of having a hypo (or a low blood sugar, the consequences of which can lead to a coma or even death). Imagine having to come in to your child’s school every day at lunch, as I did, to administer their insulin injection because the school has no resources to support this. And then imagine hoping that they finished all of their lunch and maybe not run around TOO much at break, for fear of a hypo.

Now imagine the teenage years when they just don’t want to deal with it anymore – when they long to be like normal teenagers and not worry about testing all the time and taking insulin before having a quick ice cream with friends. Imagine their worries and fears for the future – my teenager shouldn’t have to worry about whether or not her life expectancy will be shortened, or complications like blindness or liver failure, or how difficult it might be to have a healthy pregnancy in the future.

These are all realities for families with type 1 children. Parents worry whether they are doing it all right whilst dealing with the public perception amongst those who just DON’T KNOW the difference between type 1 and type 2 diabetes. We are constantly defending and educating, constantly worrying. Worrying about complications, worrying about negative relationships with food (eating means testing means injecting), worrying about things like diabulimia – when teenagers stop taking their insulin in order to lose weight. There’s just so much worry.

There’s only so much that we, as parents, can do. We need the support of well trained and well-staffed clinical teams. Every family, regardless of location, should have quarterly hospital appointments with a paediatric endocrinologist, nurse specialist, dietician and psychological support service. Some children, my daughter included, are currently attending clinics with NO endocrinologist. Transitional clinics for teenagers which include psychological support are majorly needed.

The research has been completed. The Model of Care for all Children and Young People with Type 1 Diabetes was published in December 2015. It is time to get the funding in place to secure the basic medical staff requirements and get this system on track. The technologies available for the treatment of type 1 diabetes should also be available to all children – my daughter has lived with type 1 diabetes for 8 years and we are no closer to obtaining an insulin pump for her - they should be available to any family willing to put the work in.

Adequate staff and patient training now will reduce the long term impact on the health service by minimizing the potential for complications in adulthood. My daughter and all the other type 1 children will be using the health service for life, and we need up front support now so that they do not become a statistic of complications such as blindness and amputations.

I am asking for all the TDs in attendance today to please push for the Model of Care staff requirements to be filled and work towards all of the recommendations made in this document. The strategy is in place but the funding needs to follow NOW. Please support our families and push for funding to be utilised effectively. Our children did nothing to deserve this illness but they deserve adequate treatment and care from the health service on a nationwide level.

Thank you Rebecca for sharing your speech. And thanks to both Davina & Rebecca for explaining, so well, what living with type 1 diabetes is really like.

Our first request from our TD's was that 0.4% (€5m) of the health service's annual spend on diabetes (€1.3 billion this year) be re-directed towards funding the paediatric diabetes strategy, so that huge financial savings from preventing diabetes related complications would be accrued in future years.

But then! We asked for a multi-year health strategy with cross-party agreement for adults with diabetes. The National Programme for Diabetes Team have come up with this strategy but the need government to approve the funding to deliver this plan!

Diabetes is costing the government €1.3 billion this year and over €800 million of that will be spent on dealing with the complications of diabetes. We can reduce the amount spent on complications each year by directing the financial savings that the HSE has made, in the recent years by working with the diabetes community, in reducing the cost of diabetes medications and devices. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes.

So what's next? Well, we can try to use every opportunity to remind our TD's why we need this. We need it because those of us who do not have diabetic complications want to stay that way for as long as possible. We need support from our medical teams to maintain that journey. Those of us who already have complications need the support of a complete medical team to minimise the damage of those complications.