Cagayan de Oro Philippines - Interplast Project 2018 Rotary Club of Wandin, District 9810.
“Hope for Kyuss”.
At last weeks Club Meeting The Rotary Club of Wandin presented a cheque for $1950 to the Hope for Kyuss campaign. These funds were raised by the Clubs Sergeant during the 2017/2018 year.
Picture; Graeme Johnson (L) & Sergeant Gavin McIntrye (R).
When Kyuss was born five weeks premature, he was born ‘with the caul’, which means the amniotic sac was still intact over his head and face. It is considered quite rare and is meant to be good luck…
Kyuss failed his newborn hearing test. He passed in one ear, but failed in the other. We were told it’s quite common for premature babies to not pass straight away. The next day, he failed again. We were told he had lots of wax and fluid on his ears and to leave it a few weeks and it would hopefully clear. It never did and his hearing got progressively worse and he was fitted with hearing aids at three months old.
I was heartbroken initially as his dad is a musician and loves music. I thought ‘what if he can’t hear the music?’ My sister has a hearing loss and I remember the battles she faced growing up and at school, and being a teacher, it broke my heart that my newborn would face these challenges also. Ironically, Kyuss is actually named after the American band, ‘Kyuss’ who reformed in 2010 as ‘Kyuss Lives’.
In November 2013, Kyuss started vomiting every time he had milk and was breaking out in hives after eating certain fruits. I took him off dairy and within days, the rash cleared. He was diagnosed with intolerances to dairy, salicylates, wheat and soy. Feeling concerned, I mentioned to hearing professionals I wanted to see someone and they recommended a pediatrition. I thought it was a good idea to get an all-round check-up.
In May, 2014 we ventured into the city for our appointment with the pediatrition. She looked at him and asked a lot of questions about his development and facial features, and asked to see photos of him as a baby, and took photos on her camera. I thought she was just extremely thorough and wanted to have a visual of what she had missed out on.
I had noticed Kyuss was starting to show signs of a possible developmental delay, but I put this down to his hearing loss. She sent us to the Royal Children’s Hospital, to have some basic tests done and mentioned going on the waiting list to see a metabolic specialist. I was under the impression that it had something to do with his metabolism, hence related to the food intolerances. It all made sense, so I thought.
Upon entering the hospital, I received a phone call straight away from the metabolic unit. I was so naive, thinking it was because we lived far away from the hospital and that’s they were looking after us. Kyuss was having blood tests done whilst numerous registrars came in and looked at his eyes and ears and stomach. They then led us to a room, and we waited. The specialist arrived and two other ladies joined us. The specialist proceeded to tell us it appeared Kyuss had a Lysosomal Storage Disorder known as Mucopolysacharidosis. I snickered at such a big word joking about how I would never remember that…I was yet to understand its seriousness. They told me he most likely had MPSII, also known as Hunter syndrome.
They told me he would slowly begin to regress and start forgetting things; how to walk, talk, and eat, until eventually his brain tells his body to stop breathing. He would need weekly enzyme infusions and a possible bone marrow transplant. At this point I knew it was so serious and tears started to stream down my cheeks. I was in shock and disbelief. By the time I drove home, I was distraught, and telling the rest of the family was gut-wrenching. Our hearts all broke at once.
Three weeks we waited for test results to confirm it was Hunter syndrome, but the results came back negative. It was another seven months until we had a definite diagnosis. On January 6th, 2015 we were confronted with the shocking news that Kyuss did have MPS, in fact MPSIII Type A, also known as Sanfilippo Syndrome. “Which one was that again I asked”? Her response: “The neurological one”. My heart shattered into a million tiny pieces.
To walk into a specialist’s office one day with a hearing loss and food intolerance, and walk out with a terminal illness is still unfathomable. I never knew conditions like these even existed. Being hit with such massive blows is just devastating, especially because we went through the diagnosis process twice. The first time, life just shut down, everything was slow-motion and the simplest of tasks became hard. I couldn’t look at Kyuss because it hurt to think I might lose him. I was scared to love him.
Unfortunately Kyuss’ dad Michael and I separated in August 2013, so I had no choice but to pull myself out of this dark hole and be strong for my little man. I still had a gorgeous, happy boy in front of me, and a girlfriend once said, “Tomorrow is not guaranteed to any of us”. This resonated with me and I found the strength to soldier on.
The second time was just as devastating, but there was slight relief finally having answers, and having the support of the Sanfilippo community certainly helped us cope. The rest of the family took it just as hard.
Since diagnosis we have had many ups and many downs, along with appointments. Support has been amazing and has helped keep spirits up. I still try and keep a happy balance with life and try and work when I can, because I love my job and feel it’s important to keep some normality.
When something like this happens, you certainly see the world differently. You appreciate so much more and the little things seem so trivial now. I hope that with the work of the Sanfilippo Children’s Foundation, the wider community, family and friends, my son, Kyuss, will receive treatment and get the chance at life that he deserves… I hope he can continue touching the hearts of those that he meets and I hope he can kick a ball, ride a bike and zoom on his scooter until he’s too old to do so!
Please join our campaign to give hope for Kyuss. Thank you.
Club membership is a mix of men and women from a range of backgrounds of all ages, who enjoy the friendship and Fellowship that our club is known for. Currently the Club has 25 members, 2 Organisational members and 5 Honorary members.
Please browse our web site and if you would like more information or would like to come along to one of our Club meetings, please contact our Secretary at firstname.lastname@example.org or give our President a call on 0407 819 562.
The Rotary Club of Wandin meets every Thursday evening @ 6.00pm for 6.30pm.
The Club meets at the picturesque Mont Delancey Homestead in the Monty’s Tea Rooms. For meeting details please refer to the Events Calendar.
Here are 2 of the many International programs the Rotary Club of Wandin support.
ROMAC provides surgical treatment for children in Australia and New Zealand from developing countries from our Pacific region in the form of life giving and/or dignity restoring surgery not accessible to them in their home country.
Changing futures today
Interplast sends teams of volunteer plastic and reconstructive surgeons, anaesthetists, nurses and allied health professionals to provide life-changing surgery and medical training in 17 countries across the Asia Pacific region.
We do this in partnership with local organisations, including hospitals, universities and local NGOs. Our mission is to ‘repair bodies and rebuild lives’ and we do this through providing surgical services to those who could not otherwise afford or access these, and by building the capacity of local medical systems through our training and mentoring programs.
Interplast is a fully accredited NGO with the Department of Foreign Affairs and Trade (DFAT), registered by the Australian Charities and Not For Profit Commission and is a signatory to the Australian Council for International Development (ACFID) Code of Conduct.
We are always looking for new members. There are a number of ways you can become a member, through joining as an individual, business or corporate membership, sponsoring or volunteering at any of our community projects and events such as the Wandin Rotary Custom Car & Bike Show or the Yarra Valley Beer & Cider Festival.
Becoming a member of the Rotary Club of Wandin allows you to meet new friends, fellowship, business networking and helping the less fortunate in our Community and International.
So if you are interested or want more information please contact the Rotary Club of Wandin.
Wandin is located in the beautiful Yarra Valley, approximately 48 klm’s East of Melbourne, surrounded by Winery’s, Restaurants, and is in the “Heart of Cherry Country”.
The Rotary Club of Wandin has a rich history of Giving for over 34 years and we are proud of our record of service to the Wandin and surrounding communities and around the World. Any member would be proud to inform you of the projects and services that we have provided over the years.
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