On 25th January 2009 we wrote the following letter to our local charities, Bright Rotary, Bright Lions club, Bright Business women's association & the Bright and district charitable foundation.
Dear Sir / Madam,
I am writing today to ask for your help.
My husband and I find ourselves in a difficult situation, our daughter Meg was born in February last year and suffered complications during her birth. As a result she has Spastic Quadriplegia – Cerebral Palsy which is becoming more severe as she gets older. Meg is well behind the expected milestones in her motor development and this is an indication that her condition may be quite severe. At four months of age she was also diagnosed with infantile epilepsy.
We are told by our medical team that we will not know the extent of Meg’s brain injury until she is at least two years of age and it may be as long as until she is five years old.
Her current ability at age eleven and a half months is to roll over from front to back - and that’s pretty much it. She does not feed orally and has a gastronomy tube. Meg does not have functional use of her arms or legs and, as with most cerebral palsy babies, is quite irritable and has to be carried most of the time.
Our physiotherapist has indicated to us that we really require some specialised equipment for Meg and we have been trialling some which is available for short-term hire through Yooralla’s independent living centre in Melbourne. The terms of hire are for a one month period only and, as the equipment is new and in demand, there is no possibility of extending this hire.
I was shocked to discover that the cost of the necessary specialised equipment was very high and our initial enquiries indicate that the two pieces of equipment required immediately would be in excess of $13,000. Our physio also told us that Meg would very soon require a third piece of equipment which is as yet un-costed. Most of the equipment required now will only last her until she is four or five years old.
My husband and I were thankfully able to access a Centrelink carer payment over the last 10 months as my husband had to leave his full time job as a result of the difficulties we were having with Meg. Once we were able to access some respite care for Meg, he had great difficulty finding another suitable job in our region.
Due to the short-fall of the Centrelink dollars in paying all our household expenses we have also incurred considerable debt over the last twelve months. For the last fourteen months I have had no maintenance for my eight year old son from his father. We have had an ongoing dispute which is currently with SSAT and not yet resolved.
We are not in a position to pay for the equipment ourselves, although we do have some good news, my husband last week secured fulltime employment. However, this is based in Melbourne and he will be required to be away from us five days a week to fulfil his work obligations.
In addition to the above, I had back problems throughout my pregnancy. About a month ago my back got so bad I was hardly able to get out of bed and was unable to care for Meg. A C.T. scan showed significant damage to two of my lower vertebrae and bulging disks and I am being referred to an orthopaedic spinal surgeon to discuss my options. My back condition makes it extremely difficult for me to care for my daughter.
Since we have had the equipment from Yooralla over the last six weeks, we have seen just what a difference it can make. We can feed Meg in one of the chairs and it is also ideal for the speech therapy we are doing with Meg to try and teach her to feed orally.
The other piece of equipment is a stroller, to this point we have been unable to take Meg out unless we carry her everywhere, she did not tolerate conventional prams or strollers so we very rarely leave the house with Meg which means our quality of life has been dramatically reduced.
Much of today’s medical research shows that the brains plasticity means the first five years of life for a child give us the most scope to make enormous improvements to Meg’s condition. The equipment that we require provides much more than just a seat or a push chair for Meg, they are especially designed to provide support in areas where her body’s tone is low (in Megs case her trunk). The pieces of equipment can be adjusted to her needs as she grows and changes. This stability for Meg means that if she is supported on her trunk, her brain does not need to think about controlling that area and can concentrate on another task, such as eating or using her hand to pick up and hold an object, both things that are very difficult for Meg to do. We were astounded to see her begin to make these movements once placed in the appropriate seating.
Megs condition at this point has been described as moderate Cerebral Palsy - in other words, she is able to make her body move, it is the brain injury which makes it difficult for her to move in a meaningful way and the more she moves her body the stiffer her muscles become resulting in spasticity. We have a daily stretching and exercise routine to try and combat this phenomenon. I guess the good thing for us is that there is hope that Meg may be able to learn to crawl, walk, talk and eat because she has the ability to learn how to use her body. Our only chance of this happening is to provide her with the best therapies and equipment available so we can begin to set the building blocks in place to help her achieve her full potential and become a fully functional member of our society. Meg is an extremely bright little girl and we do not believe that she suffers any kind of mental retardation.
I have unfortunately had to completely give up running my catering/function business “Great Alpine Inn” as Meg currently requires such hands on time consuming therapy on a daily basis.
Our short term hire from Yooralla is due to finish in about 2 weeks and our physio has told us that the aids and equipment funding can take a very long time to come through and will not cover the full cost. We are very concerned that if we have to wait more than a few weeks for the equipment, the progress that Meg has made using the hired equipment will be lost. As all the experts have told us, any setback at this early critical stage can have a significant detrimental effect on Meg’s future development and quality of life.
I am very worried that if I do not have the required equipment when our hire is up, that I will be unable to care for Meg on my own due to my back condition.
My family are very supportive as are some wonderful members of the community and over the past year my mother has been assisting us on a regular basis, however this year she is only able to come to Freeburgh from Melbourne for 2 days once a fortnight. This is not enough to give Meg the attention she needs. Nor is the kindness of neighbours to be expected to continue on an ongoing basis.
I have attached a photo of Meg sitting in the feeding chair hired from Yooralla. The only way I can feed Meg is by using this chair as, due to my back condition, I am unable to sit at all.
I have also attached information on the two pieces of equipment we require – the Jenx Bumblebee and the Leckey Squiggles Stroller.
As these pieces of equipment are the latest design and wonderfully adjustable and functional for disabled infants, I would make them available for other families in similar need once Meg has grown out of them.
I hope you will consider financially assisting us with our cause.
Our wonderfull charities provided the following funding for the Jenx Bumblebee which Meg now uses daily.
Rotary club of Bright $2500
Lions club of Bright $1500
Bright and district womens association $500
Bright and district charitable foundation $1500 - to be held in trust to purchase further equipment as and when required.
On 3rd March I wrote:
I am writing today to thankyou for your help.
Last night we took delivery of our new Bumblebee seating system, quite a feat as the Yooralla one on loan went back late on Sunday. We were delighted to only have one day without the assistance of the appropriate seating.
Your immediate reaction to our request certainly assisted us in the speed in which we were able to secure the required equipment.
Knowing that organisations such as yours are out there to offer assistance when times are tough make us feel very supported through our community; This support has helped with the stability of our family unit. It has also helped to strengthen our resolve to continue to live in our beautiful region even with the difficulties this brings with offering Meg the best therapies.
To keep you up to date, we have managed to secure a second-hand stroller for Meg through our Physiotherapist which Meg has been trialling and she is very happy in, this stroller is available with a much smaller outlay of $650 for repairs and additional optional extras, a much more manageable amount than $8000 for the squiggles stroller we were originally looking at.
The cortisone injection on my spine has been quite effective and my pain levels are significantly reduced, although my first visit to a spinal specialist shows a large hernia on my spine which will require surgery, as a public patient I will probably be waiting for some 18 months or so, luckily the cortisone injections can be repeated should the need arise until the operation.
So all in all we are in a much improved position than we were some 5 weeks ago.
Again your assistance with funding for Megs Bumblebee seating system has been a blessing. We can’t thankyou enough.
