He was a happy, walking, talking little 3 year old with the same milestones as his friends and cousins until the symptoms of Battens took hold.
Max has a little sister, now 8 years old, who has exceeded the natural abilities of her older brother - as she grows, he is degenerating. Even though we are heartbroken for this undesirable journey, our household is full of love and ensuring that Max can enjoy each day to his best capability. At times, this is somewhat difficult for us to provide, so we are seeking help to achieve these 4 essential things that would make a big difference in Max's life for fun and for comfort:
1. Travel storage: our small wheelchair vehicle cannot safely accommodate the luggage and medical needs for us to go on small trips. A vehicle roof-top luggage rack system or similar.
2. Bedroom music system: Max spends alot of time in his bed (due to his medical care) and has lost most of his vision. During the persistent awakened nights, where his body does not relax, music would be soothing.
3. Spa relocate and repair: Max loves the water and is missing out on one of his favourite and relaxing activities (as we have no bath where we reside). He has been given a portable spa but we have no way of relocating it to our home. It may need some tender care in moving it.
4. Princess/air chair: Max loves to have company and to be with his family during the day, wherever they are in the house/yard. Instead of being confined to his bed and his wheelchair, he can be supported in this specialised chair in a comfortable way whilst being portable and amongst his loved ones. And can snooze with the security of knowing his family is always near him.
Max's time with us is limited (Children with Battens have a shortened life) and every day is a very very special day. Time is of the essence and these are what we feel are simple but so important to give a little joy in Max's world.
If you can help provide some happiness in Max's day, we would be so appreciative ... whether you make a donation to help us reach these goals or if you can assist to make them happen by inkind support.
There will be a motorcycle ride on the 16th September 2017 on the Central Coast (click for flyer), kindly organised by the American Motorcycle Club and fellow riders to assist us, Max's family, to achieve these goals.
- Kate Linnane
- Raelyne Barnes
- Gina Cherry
- Karina S
- Emma Ritchie
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