A child is like a butterfly in the wind Some can fly higher than others; But each one flies the best it can Why compare one against the other? Each one is different Each one is special. Each one is beautiful.
Music Therapy with Miss Penny – August 2014
Mick, Margaret and Sandy were invited to a Morning Tea at Currumbin Community Special School to have a look and update of the Music Therapy Program that Kids In Need has sponsored for the last 8 years.
It was such an enjoyable and entertaining experience watching Miss Penny do her music therapy with all the children.
The response from the children was wonderful to experience and to see the children engaging and so motivated was such a delight.
Miss Penny is a true professional that has the ability to engage each and every child in the Music Therapy Program that works with 64 students.
KIN Commitee were not only treated to an entertaining morning, but also a morning tea and KIN was presented with a wonderful painting done by the children to show their appreciation.
KIN is honoured to be supporting such a great program.
Thank you Miss Penny, staff and children for the experience.
Our daughter Vayda is 17mths old. Sadly her little head was damaged at birth. At 3½ mths she was diagnosed with CRANIOSYNOSTOSIS which is when the bones in the skull prematurely fuse and doesn’t allow room for the brain to grow, if not operated on it can cause many problems including brain damage, poor health and lots of terrible intracranial pressure which causes a lot of pain.
Vayda had to wait until she was 13mths old to have Cranial Vault Reconstruction surgery at the Mater Children’s Hospital that lasted for 4 hours. It was a traumatic experience for little Vayda and for us, her parents.
Unfortunately Vayda head is still too tight and after flying to Sydney to meet with the Adelaide Craniofacial Specialists, we were advised that Vayda would require more surgery with the Craniofacial Team in Adelaide on the 1st April, 2014.
Mum will have to take a minimum of 8 weeks off work and will have to return to Adelaide 2 months after the operation and then again in 6mths for checkups. Vayda’s Dad will also fly down and then have to return to work as we have the regular bills still have to be paid.
With the stress of the operation and the financial difficulties to cover the travel and accommodation costs, the family have asked Kids In Need to assists them in raising the much needed funds during this stressful time.
With the help from family, friends and KIN, we are going to hold a raffle and do some fundraising events and wouldappreciate if you could kindly donate a gift or voucher to be used at these events. Any support will be greatly appreciated.
It is great to know that with KIN’s help that Vayda was able to have her surgery in Adelaide and is now doing well.
A big thank for the support from:
Amcal Chemist Coolangatta and Tweed Heads
Aqueuos, Anglers Warehouse, Bakers Delight Britts Meats,Coolangatta Dental Surgery Creative Waves, Cure Hair, Dinki Di’s, Eclipse Hair Studio, Far North Meats, Greenmount Beach,Griffith St Family Dental Club, Jump-a-Roo Bouncy Castle, JVC Sound & Audio,Kirra Beach Hotel, Kirra Beach Wines, PKG’S,Master Meats, Matt’s Work Mates Rebecca Lock,PWR,Scales Seafood,Silver Bridge Clinic, Snap Fitness, Splash into Beauty, Suncoast Meats,The Good Guys,The Tap House,TH Discount Fruit & Vegies, The Dolphins Hotel,Tweed Growers Fruit & Veg Tweed Heights Bakery, Tweed Heights Bottle Shop, Tweed Heights Butchers
Ron and Meg Van Zantvoort and $5,000 from Matt’s Work PWR
Lyn Brierly and her family
Billabong Swim School for children’s swimming lesson’s or information ph: 55368865
Jump-a-roo -Jumping Castles For Hire
Contact: Shaun Donaghy 0414278254
Face Painting – Contact: Sue – 0423 773 634
Fair Floss, Snow Cones etc Available for functions
Contact: Bec Sims 0434 408 059
A Parent’s Story
I have always kept a journal throughout my life journey and I would like to share with you all, the exact entry on the day my gorgeous son Ryan was officially diagnosed with High Functioning Autism Spectrum Disorder (ASD)….
“I smile wryly as I remember how I had called everyone in my address book the minute I found out we were expecting our first child. Now, 3 years later I couldn’t bring myself to call a single soul to tell them of Ryan’s diagnosis. Although I have known since Ryan was 10 mths old that something was not right, he is my first child and now 3 yrs after his birth, my internal scream is deafening as the Psychologist who has performed the 3 hour diagnostic assesment on Ryan confirms he has High Functioning Austism Spectrum Disorder. I am relieved to have a name for what I have always known as Ryan’s “quirks”, but more than anything I am overwhelmed with grief and panic as she explains what this means, but the only person I can share my grief with is the woman staring back at me in the mirror with the tear stained face (myself).
Ryan’s father is silently nodding and although I am relieved that my suspicions about Ryan’s Autism have finally been validated by an expert, it doesn’t feel like a “victory”.
I now look back on these early days as if viewing someone else’s nightmare; it all seems so unreal now.
I am happy to report that after gaining what I like to call the ‘Golden Ticket’ (Ryan’s diagnosis), I was able to access the support of the fabulous and highly experienced staff at Tweed Valley Early Childhood Intervention Service and the change in my family life and in my son is immeasurable.
Ryan attended the ‘Transition to School’ group run by TVECIS every Tuesday from 12-2pm. Through this, weekly Speech Pathology, 2 days at a wonderful mainstream pre-school and visits with Clinical Psychologist Dr Karen Plant, he has come ahead in leaps and bounds both socially and with his speech, learning, reading, writing and even his ability to concentrate on tasks !!. The difference is amazing, and for me every new thing he learns makes me burst with pride.
In addition, I cannot sing the praise of Kids In Need highly enough. The resources and support KIN provide to families with a special needs child/children during tough times is immeasurable. The friendships I have formed with KIN Committee Members as well as the staff from TVECIS are friendships I will cherish for life.
We still have tough days but they are getting fewer, and perhaps, if I can offer any advice to other parents that may be in the early stages of their child’s diagnosis, most important of all, ASK for help, and don’t send yourself crazy with thoughts of “What if?” and “If only” as these are wasted thoughts. Instead take a moment to celebrate the uniqueness of your child.
Hi my name is Naz. I am 4 years old and I have cerebral spastic quadriplegia. I would just like to say thank you for your kindness and support in helping me to become all that I can be.
A Parent’s Story
Dear Sandy & Committee,
I am writing to thank you for supporting our efforts to provide much needed equipment for our son Nazareth; your contribution is greatly appreciated. We have now had fittings for both AFO’s and DMO’s for Naz and final fittings are next week and then we will receive the final items.
Every donation such as yours makes a difference to Naz’s life and yours is no exception. Naz constantly needs therapy sessions and aids to help him rediscover the connection between the brain and the body, and the results so far have been encouraging. Compared to this time last year, Naz has worked very hard and is showing encouraging signs of improvement (which are big achievements for him!!), enjoying additional activities and is constantly learning new skills. The AFO’s and DMO’s are both vital aids that will continue to assist his development and independence.
On behalf of Nazareth and our family, we would like to sincerely thank you for your kind support and contribution to helping Naz become all that he can be. It is organisations like you that continue to make a difference in people’s lives and we truly do appreciate it.
Kind regards Martin & Leah (For Nazareth)
A Parent’s Story
Phoenix Jackson Timmo Smith was born on the 20th of November 2009 at the Tweed Heads Hospital. Weighing in at 9 pounds with healthy lungs and Apgar scores of 9:9, he was the picture of good health and captured our hearts.
We quickly learned he had some hearing loss and numerous tests over many months were performed to find the cause.
In May 2012 through blood analysis, Phoenix was diagnosed with Infantile Refsum Disease. It is one of 3 disorders on the Zellwegers Spectrum also known as Peroxisomal Biogenesis Disorder (PBD). It is an extremely rare, inherited autosomal recessive disease in which toxins build up in the body and slowly destroys the myelin sheath of the brain. This ultimately results in loss of life usually in the childs 20’s. Phoenix is one of only 5 children living in Australia with this disease. There is no cure.
After realising what his future looked like, we learnt never to take life for granted. Even though Phoenix faces regression, mental retardation, loss of motor control and nervous system, blindness, deafness and seizures, he has never let it get in his way. He has an unbelievable zest for life.
Phoenix currently has development delays, muscle weakness, unusual gait, night blindness, Retinitis Pigmentosa in both eyes and profound bilateral deafness. Doctors cannot tell us when he will begin to regress, be unable to walk, talk or begin failing. Our aim is to give Phoenix quality of life while we still can.
Phoenix is an amazing little boy. Kind, caring and willing to give everything a go. From the beginning when we learnt of his hearing loss he always surprised us with his determination, overcoming many obstacles.
Phoenix loves cars, loves to have kisses and cuddles and makes everyone feel needed and loved. He loves to be outside listening to the birds, kicking a ball and chasing his little brother Kai. He loves to read with his big brother Nate, loves to cook and everyday teaches us to appreciate the small things.
It is a rare day that Phoenix isn’t smiling and his smile and laughter is infectious.
Since receiving his Cochlear Implants in July 2012, Phoenix has become more independent and it is so beautiful to see him stop, turn to the sound and watch his face light up with joy. He enjoys his Mondays at swimming lessons, Tuesdays with his Early Intervention Teacher, Wednesdays at Kindy and Thursdays with Speech Therapy and has ongoing Mapping appointments.
Currently we are in the process of having Phoenix’ mutations in his genes identified so his brothers Nate (5) and Kai (16 mths) can be tested as to whether they are carriers of his horrible disease.
In July 2013 the Global Foundation for Peroxisomal Disorders is holding a conference in Lincoln Nebraska, USA that provides medical support and treatments from Specialist Doctors and information on advances in research. We will have the opportunity to meet other families and their children who are going through the same experiences as we are. We can share in their joy as well as grieve together.
We believe it will be incredibly beneficial for Phoenix and I to attend the conference and we are excited to have the opportunity to learn as much as possible about our medical options and about ways to improve Phoenix’s quality of life, particularly as there are no support groups here in Australia and specialist care is limited.
The cost for this trip is approximately $10,000 which we hope to raise through fundraising, sponsorship and donations of money, goods or services.
This year has been difficult financially and emotionally for us, however, we feel that Phoenix deserves every opportunity and support that we are able to offer him. For this reason we are asking for the support of our friends, family and local community and we would be forever grateful for any contribution you are able to make.
In terms of development Phoenix is writing his own book as many children with this disease do. It affects each child so differently, and we look forward to his next Chapter.
Phoenix has taught us to have patience and to make the most of life. It is a pleasure to be Phoenix’ Mum and we couldn’t be prouder of the little man he is becoming.
Thank you for taking to time to read about Phoenix and our family and we hope you will consider donating,
Please feel free to contact me if you would like any further information.
An Update on Phoenix:
What an amazing time we had on our trip to the US. We learnt so much medically and it felt so good to be surrounded by families going through the same. We are forever grateful to all who helped us achieve our dream and know we will benefit continually from our gained knowledge. We will never forget Phoenix’ face when he met Minnie Mouse (he has a crush) and also Eyeore! Thank you all! What a great pleasure it has been for KIN, Billabong Swin School and the Community to be able to support this wonderful family on this journey.
4 December, 2012
Kids in Need
Re: Help with funding a vehicle ramp for our son
We are urgently seeking help to fund a special needs vehicle for our son Cadel. To date, we have been able to fundraise the majority, with help from Terranora Lakes Lions Club & other local services clubs. With the money raised so far, and with advocacy from the Terranora Lakes Lions Club, we have been able to negotiate an affordable price on a VW Caddy. We only need a further $16,100 towards installing the wheelchair ramp in the new vehicle and we are writing to you to ask if you can help us make this happen.
Our 13 year old son Cadel is profoundly disabled. Cadel suffers from a rare genetic disorder. He is unable to walk or talk and is blind. Cadel also has autism and needs help with all his daily activities, including toileting, dressing and eating. Cadel is a very tall boy and weighs approximately 80kgs. He uses a special wheelchair which supports his body and is suited to his extreme autistic behaviours (ie: persistent rocking and head-banging).
Cadet no longer fits in the back of our old van, which is in desperate need of replacing due to the deteriorating condition of the engine and the hoist. Because of his height, Cadel often bangs his head on the roof of the van when we are transferring him in/out and also when we are driving along the road (ie: going over bumps on the road).
We are both very loving parents. Caring for Cadel and his older sister Chrystal, who also suffers from autism (ASD), is a full-time job. We are both on a carer’s pension and live a pretty simple life, with very few luxuries, so there’s very little money to spare for new things. We are now in a situation where we urgently need to fund a new modified vehicle to enable us to keep our son involved in the community and for school runs and the many medical appoinrnents we have to attend,
Our son is a fun-loving, little Aussie battler. One of his favourite things in life is to simply go to the closest wheelchair access swing to play, however we need a reliable vehicle to take him. Can you help us make this happen?
We look forward to hearing from you soon about how you may be able to help us.
Peter & Sheral Martin
Cadel has a new modified van thanks to the community. It is such a good feeling to know the community has made such a difference to a local families every day life.