Sema has Epilepsy and Left Hemiplegia (paralysis on her left side) – which resulted from some brain surgery that she had to control her epilepsy. She also has a mild intellectual disability to contend with too.

Her left hand and arm are particularly affected and Sema works really hard to try to regain some function in those areas. Sema wears a special splint for 6-8 hours each day to aid in this rehabilitation but her current splint was 2 years old and not functioning well anymore.

We wanted to give Sema the opportunity to maximise her potential and funding a new splint would do just that.

Sema and her family had many obstacles in their way and we knew that removing this one would be a great help. It took our wonderful community just three days – bless ‘em!

Put yourself in Damien’s mum’s shoes for a moment…

’Your son has severe global brain damage’.

I feel sick… dizzy… shocked… heartbroken… frightened… confused… my ears are ringing… my eyes are tearing… my hands sweating… my knees start jumping…

It was 2007, he is only 7 months old. Looking at my beautiful little boy, I couldn’t understand. Yesterday, he was my perfect little man, today he is damaged. “But, he can smile… he is so handsome… I did all the right things in my pregnancy… LOOK AT HIM !” I had a normal pregnancy, didn’t get sick, delivery was normal. How could this happen?

‘The results of the MRI show damage all over his brain’, he says.  I don’t remember what he said after that.

Sadly, our marriage failed 6 months after the diagnosis.

Damien has had every test the relevant medical teams at the Children’s Hospital could come up with to determine the cause of his brain damage, but, to no avail. His diagnosis is a global developmental delay, hypotonic cerebral palsy, microcephaly and Epilepsy. I have been told it will get harder and he will become more challenging and expensive.

Damien turned 6 on the 9th April 2013 and is in his second year at school. He weighs 26 kg and stands 110cm tall.  He is very, very heavy for me to lift. He cannot crawl, bum shuffle, walk, stand unsupported or talk. I thought that by now Damien would be walking, a strange little walk, slow and uneven. I thought he would be using a few words by now…

Damien’s mum is fortunate to access respite carers who visit, as needed, to help care for Damien. This may include a shower, taking him for walks and generally keeping him busy while mum gets to spend some precious time with his 9 year old sister.

Legally, there should have been a hoist for the carers to use when they lifted Damien. Government funding only covered part of the cost. Ramps should also be installed at the entry points to the house to avoid any accidents transferring Damien in and out. There was no government funding for ramps.

There is a great risk that Damien would lose access to his carers if these items were not installed asap.

The gap funding required was $1,464 and our wonderful community donated that within 2 working days!

Due to privacy restrictions surrounding this beautiful little angel’s case there are lots of things that I’d really like to tell you but simply can’t.

Here’s what I can tell you:

To protect her identity we called her ‘Amelia’.

Amelia has an Acquired Brain Injury – an injury that she received in a non-accidental way.

The damage that her brain suffered left her with permanent disabilities. She has very limited ability to move independently and displays significant spasticity in both her upper and lower limbs. Amelia will need significant specialist therapy support and adaptive equipment for the rest of her life.

Short term goals for Amelia include her learning to sit on the floor with decreasing levels of support and learning to stand and walk with assistance.

In order to assist with these goals, Amelia needed a Second Skin Body Suit to keep her body upright and symmetrical when sitting and standing and she needed a supportive chair with an activity table so that she could sit safely and access play activities and therapies on the built-in table top.

Thanks to some funding support from Second Skin, we could purchase Amelia’s suit at the reduced price of $1,610. The cost of the chair and table was $1,762.

Two days after launching the appeal, the Victorian Government agreed to fund Amelia’s chair so we now only needed to fund her Second Skin Suit. Since we’d already raised enough to do that, her appeal was closed. The extra funds raised will be kept to assist with Amelia’s future needs – of which there will be many.

Thank you so much to everyone for helping. It only took 2 days to make this little dream come true. Just terrific!

Mahaylia is a delightful little girl who has delays across all areas of development due to a very rare chromosomal abnormality. She needs intensive input and therapy in order to prepare her for all aspects of daily life – including getting her ready for school next year!

Mahaylia has a very loving and supportive family who give all their time and resources to ensure that Mahaylia has every opportunity to reach her potential – something that every parent wants for their children.

The last couple of years have been difficult for Mahaylia’s family and their resources are fully stretched. Unfortunately, Mahaylia is not able to access government funding for her therapies because her rare chromosomal abnormality has not been included in the current list of qualifying conditions due to the fact that so few children in Australia have the condition.

One of the key therapies for Mahaylia this year will be speech therapy. It is absolutely vital that she is able to have a chance to participate in mainstream education – and that she can do so with confidence that her classmates and teacher can understand her; that she ‘fits-in’ and can have the opportunity to be the social little girl that she so desperately wants to be.

It is devastating for her parents to watch Mahaylia being left out of friendship groups at kindergarten because she is so difficult to understand at the moment. Mahaylia has no friends at kinder, no friends’ parties to attend.

We needed $3,480 to ensure that little Mahaylia could receive a fortnightly speech therapy session throughout the year to give her that chance to be more like all the other children when she starts school this year. So thrilled that we were able to reach that target for Mahaylia – thanks everyone!

Being able to communicate is, for many children with serious illnesses and disabilities, the most important ‘ability’ to have. For children with degenerative conditions, learning to use assistive technologies can help them to communicate with their parents and carers when they lose ther verbal skills. We’ve just been able to fund some items for Luke & Freyja that will help them to do just that. You can read about it here.

What a wonderful story Asli’s is. That cute little face and contagious smile won over everyone – including the fantastic folks at Siemens and Australian Hearing who pitched in to make Asli’s dream come true – read about it and see a video of Asli using her new ‘water ears’ here.

There’s nothing better than seeing exactly what your generosity has achieved. We love it when parents send us photos and videos of their child using the equipment that has been funded through the wonderful IGAB community. Click here to read Emma’s story and watch a video of her stepping out (literally!) in her Second Skin Body Suit.

Meet Amy.  Amy has what is thought to be a very rare genetic condition – so rare that doctors have so far been unable to give a 100% diagnosis.

What they do know is that Amy has a type of neurological condition that affects her muscle control.  Amy can’t walk and suffers from abnormal movements and core stability problems.

In 2010, when just 18 months old, Amy’s medical team had recommended that she be fitted with a body splint – called a Second Skin Suit.  This suit would give Amy greater independence in upright positions such as standing and sitting.  She’d wear it every day, allowing her muscles to work better and get stronger.  It was hoped that it would also help to reduce Amy’s involuntary, abnormal movements.

Amy’s suit cost $1,960 and we were thrilled to be able to fund that suit for Amy thanks to the generosity of our wonderful I Give A Buck community and some grant funding from Australian Unity Foundation.

Amy’s skin suit literally changed her life.

For the first time ever she could sit unaided and could see a totally different perspective of the world around her.  It helped her posture so much that she was able to eat food without it having to be pureed first.  And she loves it!  Amy had been in danger of having to have a PEG feeding tube inserted into her tummy, so this was a fantastic bonus for her.

In August 2011 Amy’s physiotherapist suggested that an iPad would be really useful for Amy to help develop her communication skills. We were only too happy to provide Amy with an iPad through our iPads for Priority Kids Program. The touch screen functionality of the iPads are ideal for children with muscle tone issues who would never be able to use a traditional keyboard.  There are some absolutely terrific learning and development apps designed for children too. Have fun Amy!

September 2011 was review time for her Second Skin Suit. It had had such a huge effect on her life that we didn’t hesitate to launch a second appeal to raise the $1,990 needed for Amy’s next suit.

Amy’s improvements continued and her new body awareness helped her to move more confidently. She was now able to pull herself up to stand, not quite standing on her own, but close.

By early 2013 it was time for her 3rd suit (a suit is tailored to a child’s specific measurements, so they usually only last 12 months). This next suit had been designed to further improve her trunk and pelvis stability and control so that she could more effectively build on her sitting , standing, sit to stand and  mobility skills, particularly with arm and hand use at the same time.  It would also assist her to develop a higher level of independence, skills and confidence in preparation for learning and participation in the school environment. It would help Amy to develop her self-care, learning and play skills to the highest level possible.

Amy’s therapists were aiming for her to be able to “sit and do”, and “stand and do” more successfully and effectively. Amy’s mum said, “Amy is crawling everywhere.  She is climbing up on furniture and getting into the cupboards like every other toddler.  She uses a hart walker which she loves. It took a little while but now she can walk to our local shops in the walker, with a little guidance.  When Amy wears the suit, her posture is improved greatly and I find she can concentrate for longer periods of time.  When she is in the walker, the suit really supports her movement, her posture is improved, so she does not slouch and tire as quickly.  The new suit I believe will support her with her standing and walking. Can you thank all the people who have supported Amy?  Amy has made remarkable changes in her development. The support and contributions from people have really made a difference in my little girl’s life.”

That’s what it’s all about! Watching how we have all been able to band together to improve Amy’s life has been a fantastic journey and yep, we were able to do it again, easily raising the $1,990 needed for Amy’s 2013 suit.

Tara was born in 2005.  She seemed like the perfect baby who never cried until she was rushed to hospital at just 6 weeks old with what seemed like an ordinary case of bronchiolitis. During that evening she suffered a seizure that lasted for over 90 minutes and she has never had a seizure-free day since.

Tara’s underlying condition remained a mystery until she was diagnosed with Dysphagia and Floppy Baby Syndrome in 2006 and with Autism in 2007.  In 2009 Tara was also diagnosed with Dravet Syndrome – one of the most catastrophic forms of epilepsy. This is a very rare condition effecting only a few hundred children in Australia, and probably less that 1000 worldwide.  It is life threatening and there is a high chance that one day a seizure will take Tara from her family.  In order to do everything possible to prevent this from happening Tara has a seizure response assistance dog to be beside her particularly at night.

On an average day Tara has over 100 minor seizures and around 5 to 10 seizures that render her unconscious.

We first met Tara earlier in 2011 she was five and a half years old and still not fully toilet trained as, although she knew how to use the toilet, every major seizure resulted in an accident, meaning that the amount of nappies needed on a daily basis was similar to a new born baby.  Tara was on a costly, special thickened fluids diet and regular medication.  The costs associated with these day to day expenses added to the special equipment that she needs to support her and keep her safe during seizures have put a big strain on the family budget.

Tara’s mum is her full-time carer and her dad helps during the day after working night-shift as a baker in the country town in which they live.

Due to the severity of Tara’s seizures she often ends up unable to walk, on a good day she can walk but a bad day she cannot even support her head.

In February 2011 we were able to support the family by contributing $2,000 (via Tara’s Car Appeal) towards a full transmission rebuild on the family’s wheelchair modified Tarago which had stopped working in reverse. Without the van, Tara couldn’t access her Physiotherapy, Occupational Therapy and other medical appointments.

Tara’s Appeal raised a little extra than required and we were able to put that to good use in July 2011 by buying Tara a much needed new bed that could fit her mum in it too for those nights that Tara needed someone to sleep with her.

By August 2011 Tara had sadly deteriorated and needed additional supports.  She now needed a walking frame and a special seat that would give her support through her seizures, and the rest period after each seizure, as well as for use during feeding as she was losing the ability to feed herself.

These special seats, called Gravity Chairs, are $1,895 each.  Tara could access $1,200 of funding towards the chair via her Helping Children with Autism package and we launched an appeal to cover the remaining $695 – and this wonderful community raised that in just 7 days!

Early in 2013 we were again able to help little Tara, this time raising $1060 to enable her to have one-on-one swimming lessons. Swimming lessons greatly improve Tara’s leg strength to assist with walking and the support that the water provides her gives Tara a sense of independence that she can’t get from any other activity. Her face lights up when she hits the water. Well done everyone!

All the news from the IGAB world for this week is here.