Introduction and Summary
Dear Friends, Family, Acquaintances and Kind Strangers,
We have reached the stage where we must acquire a new, customised wheelchair-accessible vehicle for our son, Elias. We have held off doing so for as long as we can because we simply can’t afford it.
This is a very expensive venture that we cannot undertake on our own, and we need your help.
We are seeking to raise a total of $110,000 as soon as possible; we initially aimed to raise this amount in 3 months but were unsuccessful.
Note that we have already received approximately $47,000 from direct bank transfers, and another $5,000 raised so far by a friend's own fundraising effort for us - bringing the GoFundMe campaign target down to $63,000.
I am happy to privately provide our fundraiser bank account details to people we know and trust personally, if you would prefer to donate that way (please don't be offended if I decline to provide the bank account details if I don't know you sufficiently well!).
If you are so inclined, feel free to share this appeal with other people in your network – the kindness of strangers is also welcome.
More information is available below if you wish to read it.
More about our family and our appeal
Below is a great description of our family situation, and the need for a customised wheelchair van.
You can also get some insight from this short video: https://www.youtube.com/watch?v=Qub8q179Les&feature=youtu.be
I run a one-man consulting business, which I started seven years ago to provide our family the flexibility it requires to meet Eli’s needs. Those needs are intensive and, as a result, I average only part-time paid hours. Shell cares for Eli full-time. When he is at school, she co-ordinates the many aspects of his care: managing his NDIS Plan, liaising with support workers and therapists, addressing the avalanche of administration that disability invariably produces, and researching and engineering equipment and solutions for Eli’s unique and complex limitations. She doesn’t receive the Carer Payment. So, we get by on a part-time wage in a double income society, and it’s not enough to reasonably afford a wheelchair van.
Wheelchair vans typically cost around $80,000; however, we need a highly customised vehicle that will cost in the order of $110,000. The NDIS funds only a portion of the modifications our van would need, and the NDIS will only pay to modify new vehicles. Only certain vehicles are suitable for such modifications, and those that are compatible with the mods we need cost a lot. We get around in a second-hand car; we can’t afford a new car, let alone one that is expensive.
Eli is now ten years old. He weighs approximately 35kg and is technically too heavy to lift. Two years ago, Shell injured her back lifting Eli. She narrowly avoided surgery and hasn’t been able to lift him since. I really shouldn’t lift him the multiple times each day and the many awkward ways that I do, but I don’t have a choice.
We rent a house and make do in the non-accessible houses available to us. Designing and sourcing appropriate equipment has been a mind-bogglingly laborious process, assisted only by an industry that is notoriously inefficient and inept. As such, we are still getting by without several essential pieces of equipment.
In the meantime, I am fast approaching the point where I won’t be able to lift Eli anymore. Without a wheelchair accessible vehicle, this means we will not be able to transport him. Few wheelchair accessible buses operate around Maitland, where we live, and there are few wheelchair accessible taxis. Eli’s already very limited world will shrink further. Equally calamitous, if I injure my back, we will no longer be able to provide our son the care he needs. Contrary to its lofty objectives, the NDIS would not sufficiently backstop our family in this situation.
Shell and I are asking to people to donate money towards the purchase cost of a suitable wheelchair accessible vehicle. We are hoping to raise this money in the next three (3) months. Please support us in this, and please give generously. We really need your help.
More about Elias
For those of you who don’t know him very well, here is some information about the boy named Elias:
Our only child, Eli—as he is commonly known—is a wonderful, intense, earnest, expressive young man. Others describe him as ‘delightful’ and ‘a force.’ There is something about Eli: people are drawn to him. He has the sweetest nature I have encountered in a person.
Eli is confident, creative, articulate and full of potential. He has a voracious appetite for knowledge and he is wise beyond his years. He has accepted a highly-coveted position in the Maitland area’s Opportunity Class for gifted Year 5 and 6 students, and he recently competed in the State Finals of the Premier’s Spelling Bee, charming the Premier, Gladys Berejiklian, and landing himself on TV.
Eli loves maths and computers. He appreciates all genres of music and has a keen ear. He is interested in history and other cultures. He enjoys drama and telling imaginative stories. He wants to learn as many languages as he can, so we’ve started with Mandarin.
Despite his severe disability, Eli has an insatiable zest for life and a deep empathy for others. He has a strong desire to connect with his world and the people in it. He adores a good chat.
Eli has a physical disability known as Amyoplasia Multiplex Congenita, a form of Arthrogryposis. It is a congenital (from birth) connective tissue disorder whereby the muscles in the upper and lower limbs fail to form. This results in fixed joint deformities and contracted limbs.
Amyoplasia is quite rare, presenting in 1 in 10,000 births. Many medical professionals are unfamiliar with the condition, and we don’t yet understand its cause. Short of a miracle, there is no fix for amyoplasia. It is not degenerative; however, it generally leads to a decline in limb function unless it is closely managed throughout life.
Amyoplasia ranges from mild to severe. Eli is severely affected. When he was born, he looked like a pretzel. It was heartbreaking.
Eli cannot straighten his knees or flex his hips. This means he cannot walk or sit on the ground or use standard seating. He is confined to a kneeling position, which has implications for every aspect of daily living, such as bathing, dressing, toileting, sleeping...
Since birth, Eli has undergone surgeries, endured painful physiotherapy, and worn plaster casts and uncomfortable splints to increase his joint range as much as possible, but as he grows, most of the gains are inevitably lost. Now that he is older, we can only ‘shift’ the limited range he has.
Eli can kneel, which allows him to be independently upright, and—amazingly—he can knee-walk, which affords him a degree of mobility. He can walk only on padded surfaces, though, to protect his knees and reduce the risk of head injury in the event he falls.
If he trips or loses his balance, Eli cannot use his arms to brace himself or break his fall. Eli has no upper limb function whatsoever. He can’t bend his elbows or raise his arms, and he can’t flex his wrists or move his fingers. He can’t grasp a pencil or hold a spoon, so he relies on a scribe and voice-activated software to complete his school work and is either hand-fed or eats directly from his plate.
Not being able to use his arms is terribly restricting for Eli. He is unable to interact with most objects and perform most activities. He would love to build contraptions and write out maths problems and sketch his ideas. Mercifully, he can operate a tablet device, such as an iPad. We place this at his knees and he generates momentum with his torso to swing his arms and position his hands on the screen.
It has been eye-opening for us to discover the far-reaching effects a significant function-restricting disability has on a person’s development, opportunities, and lived experience. For example, we only recently appreciated how poorly Eli understood basic physical forces - something a toddler learns first-hand through tactile play, such as building with blocks. In so many instances, Eli is unable to exercise his initiative, explore his surroundings, and receive neural feedback from basic activities we all take for granted.
Broadening Eli’s world and keeping his keen mind stimulated is an exhausting, challenging full-time job. This, combined with his physical needs, thoroughly consumes Shell’s and my resources and has essentially emptied our lives of much else. It has also directed us down ever-increasing degrees of circumstantial disadvantage and heightened our exposure to the failings of systems and people.
Loss begets loss, we’ve learnt. Sensational and un-stoic as that sounds, this is our life and this is what it takes to care for our son. It is our great privilege to serve our precious boy. We wouldn’t be without him, but—if we could—we would definitely have things another way.
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