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GUEST BLOG- MIA AND BATTEN DISEASE

Mia was born to Australian parents in Dublin in July 2009. She was a robust healthy baby and met all her milestones for the first year with ease.  She inherited her Mum and Dad’s love of the outdoors and travel and was exploring the globe in a baby back pack and pram in her first year. Mia learnt to crawl on a ferry trip as her little family made their way to Italy for a memorable cycling holiday with friends and took her first steps in the south of France at 12 months on a mother daughter holiday. But before she could even walk Mia was banging on the front door demanding to be let out to explore and breath in the fresh air. Driving wind, hail, rain or snow wouldn’t deter her in anyway and she’d drag her mum out to the frosty playgrounds to visit the ducks everyday. She loved riding around in a baby seat on the front of her Mum and Dad’s bicycle and was always the kid swinging highest and fastest in the playground. This little daredevil was cheeky and clever and kept everyone entertained and delighted her buddies with her confidence, independent spirit and a good dose of mischief too.

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Mia’s family relocated to Singapore and her little brother Toby entered the scene shortly before Mia’s second birthday. The blonde chubby duo were a force to be reckoned with and were keeping Mum and Dad on their toes.

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Mia was swimming and scooting and racing around on a balance bike. Between her second and third year her language development slowed a little and some challenging behaviour arose. These mild concerns could easily be explained away by all the big changes in her life, the terrible twos, a new sibling and moving country. Her nursery teacher and paediatrician reassured her family that children develop in their own time. However a month after her third birthday Mia had her first seizure and over the next 9 months up to 20 seizures and numerous tests including MRI’s and EEG’s. Mia was eventually given the heartbreaking diagnosis of late infantile neuronal ceroid lipofuscinosis or as it is more commonly known Batten Disease. This rare genetic condition means Mia, a once healthy child, has over a few years lost the ability to walk, talk, see and eat. When Mia’s doctor confirmed her diagnosis he said “Mia probably won’t make it to high school, we are talking about years not decades”.

Mia is tenacious and fearless and this along with her determination is her greatest asset for the challenges she and her family face. She makes her family smile every day and is so incredibly tough to endure all she does with a zealous and resilient spirit.

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When Mia isn’t in and out of hospital her schedule is jam packed for a 5 year old kid.

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She attends school and weekly hydrotherapy, Horse riding, massage, physiotherapy, gentle chiropractic play therapy sessions. Mia also regularly sees an occupational therapist, vision consultant, speech and communication therapist, on top of a myriad of visits with our GP, paediatrician and specialist doctors and clinics including neurologist, gastroenterologist, dietician and nutritionalist.

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Mia loves getting out and about in her bike trailer used in place of a wheelchair as it handles off road a lot better. Mia’s family are focused on making memories and last August her family were determined to take her to Uluru to see the rich vibrant colours and visit this unique spiritual destination that her parents had yet to visit; and under different circumstances they would have delayed for years. It was a memorable holiday and while it wasn’t without its challenges it was incredible to see a special part of Australia. The bike trailer held up well on the wheelchair accessible paths but to really make the most of the other walks around the base of Uluru and Kata Tjuta a backpack style carrier, if suitable, would be recommended.

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Things are getting a little more difficult as Mia continues to lose trunk and head control and keeping up with her diseases rapid progression and ensuring Mia is getting the ideal seating support and equipment can be a tricky but her family is determined to give her all the love and adventure she can muster.

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You will often see Mia on weekends cruising down to the beach or park with Mia’s younger brother Toby racing on his push bike and BonBon her black labrador bounding along beside her as Mum and Dad take turns pushing the trailer, grabbing a coffee and jumping in the ocean. Mia loves the wind in her hair and has a smile plastered across her face especially when the road is a little bumpy.

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If you have read this post and want to show your support for Mia and her family and help them to bring awareness to Batten Disease, there is something very simple you can do.  Take a photo of you bouncing in some way, whether it is bouncing a ball or even bouncing a wheelchair over a bump, hashtag it #Bounce4Batten and post it on social media.  There are less than 50 children in Australia with this disease so awareness is what is needed.

Mia’s Mum Peta explains how #Bounce4Batten began last year –

“Bounce4Batten was launched in 2014 by our family and friends and was inspired by our daughter Mia who loves to bounce. We hosted a party in our backyard with a bouncy castle and trampoline and invited friends to pop over for a bounce; it was a festive atmosphere and the support and joy was overwhelming and made a memorable day. The concept was for friends and family to promote Batten Disease by bouncing and posting photos on social media. The joyfulness of bouncing delivered a message. The reaction was fantastic, friends and friends of friends from around Australia and as far afield as New York, Singapore, and Paris bounced and posted.

In 2015, we hope to spread the joy even further and create awareness or all Batten children and their families. One day soon we hope to play a part in finding a cure through supporting research via the National Charity organization ‘Batten Disease Support and Research Association’ a donate button can be found on our website.”

So what are you waiting for?  Let’s support Mia’s family and other families living with Batten Disease by posting a picture on social media with #Bounce4Batten.

Thanks to Peta (Mia’s Mum) for writing this guest blog.

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4 thoughts on “GUEST BLOG- MIA AND BATTEN DISEASE”

  1. Thank you for your blog. My previous grandson was diagnosised in September with Battens disease. His name is Bentley and like Mia he has lost the ability to walk or talk, but he is such a happy little boy. His parents are wonderful but as you know it takes a toll on them physically and emotionally. Please keep their family in your prays.

    Reply
    • Hi Karen, I am so sorry to hear about your Grandson’s diagnosis but thrilled to hear he is such a happy little boy. Having a child with a disability is like a roller coaster ride of highs and the tough times of course. I send my very best to your family. Kind regards. Julie

      Reply
  2. My son carl was diagnosed in 2012 he is the most amazing kid my hero.he will be 14 years old 28 July tomorrow going to high school in September never give up

    Reply

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