My mum and Dad had no reason to think anything was wrong. Then I surprised them (especially my Dad, hee-hee!) by coming a month early. I was making a lot of fuss straight after I was born, and a whole team of nurses & doctors showed up. I was popular! Before mummy could have a cuddle, they whisked me away to Intensive Care as I was seizing and not breathing as I should.
I couldn’t be picked up or held until day 10..!
Then would you believe it, they wrapped me in an a cold water suit and cooled me down for 72 hours, in the hope my brain might heal. There were leads and probes just about everywhere you looked. Oh, and lots of beeps too. It wasn’t until day 10 that I could partially see, feel and smell my mummy and daddy as I laid in their arms – that was hard, and even tougher for them.
The doctors said I had brain damage and Cerebral Palsy – that means I can’t move my body properly. I also have seizures which make me very scared. I often go to see my friends at hospital, and am a frequent traveller in a bright yellow van with flashing lights, especially in the middle of the night!
Read the rest of the story…
Do you work for a Trust or Grant awarding body that could help Amber-May with buying the equipment she needs to be safely and comfortably cared for? Or do you know of a trust or grant making body that may be able to help?
Below is a summary of the equipment she needs – or you can view a more detailed breakdown
EQUIPMENT TO BE FINANCED
- Grant Vortex 21-26 outdoor condensing boiler (to replace broken and inefficient old boiler) – £1,500
- Astor Bannerman Avero Height Adjustable bath (or similar) with hydrotherapy water jets – £7,000
- Astor Bannerman Showering/Treatment Trolley – £3800 inc delivery
- Air conditioning / heating units x 2 (bedroom, & wetroom) – approx £1500-1750 (inc electrical fitting)
- Astor Bannerman height adjustable sink – £3400
- Powerful shower and specialist disabled shower tray etc. – £600
- Sharps 2.5m Double fitted wardrobe for clothes and storage x 2 – £1500 each
- Maplin 2 cameras cctv, viewing tablet and monitor – £299
- Wallbed King single vertical studio bed – £599
Could you donate one of the pieces of equipment that Amber-May needs?
- Outdoor condensing boiler – to replace broken and inefficient old boiler
- Height Adjustable bath with hydrotherapy water jets
- Showering/Treatment Trolley
- Air conditioning / heating units x 2 (bedroom, & wetroom)
- Height adjustable sink
- Powerful shower and specialist disabled shower tray etc.
- 2.5m Double fitted wardrobe for clothes and storage x 2
- CCTV cameras, viewing tablet and monitor
- Single vertical studio bed
what folk are saying
Think of a room with a hospital bed in it (no ordinary hospital bed but one with high wooden surrounds), a hoist, a wheelchair, a standing board, and various bits of smaller medical equipment such as a suction machine and heart monitor and you could be mistaken for thinking this was a hospital room. But it isn’t. This is Mum and Dad’s living area, and Amber-May’s bedroom (Mum’s bedroom too when she’s on night duty.)
It seemed a reasonably large room when they moved in, but as Amber-May has grown, so has the equipment, not only in size but in quantity. I haven’t even mentioned her bulky beanbag (not the cuddly, let-me-relax type but a large, unwieldy, solid structure), and the array of specially designed toys. Or the fact that a nurse is on duty in that room for a good part of the week, both day and night.
Then there’s the steady flow of visitors – physios, other health professionals, people to adjust the equipment etc. and thankfully, some kind and generous friends bearing gifts.
Mum and Dad have no choice but to share their living area with all the above. There’s simply no other available space in their house as it is at the moment. It’s especially hard as there’s an open staircase right by Amber-May’s bed. She disturbs the girls asleep upstairs – they disturb her!
It’s not an easy environment in which to enjoy quality family life or to relax after a tiring day. Or watch your favourite TV programme. Or have coffee with friends. And it’s certainly not an ideal place for her sisters to play freely. It’s not ideal for Amber-May either.
I’ve been privileged to spend time (much of it in this room) with the family. And I see, first hand, some of the challenges of sharing a living area with a child who has severe disabilities. I know what it’s like, for example, to discover late in the evening, that Amber-May has had an extremely runny tummy, the result of which has made its way into every crevice of her wheelchair and onto the new carpet! Cleaning Amber-May without getting more mess everywhere is challenging. Wheeling the wheelchair into the kitchen, leaving a little trail of devastation behind us, and cleaning it bit by complicated bit, is hard at any time, but harder still as the clock ticks relentlessly on to midnight and beyond. And then there’s the carpet!
A specially designed bedroom for Amber-May with a wet room attached, plus room for her equipment, would make it so much easier to care for her day by day – imagine being able to wheel her straight into the wet room, to be able to wash her easily, and then hose the chair down.
Not only that, but it would give all of them back the space they need to be a family, to have some privacy, to be able to relax, where the children can play without worrying about waking Amber-May or tripping over equipment – the things so many of us take for granted.
We can’t take away the burden of responsibility they carry, but we can help to make it easier for them.
One symptom of Amber-May’s condition is that of uncontrolled whole body movements, and frequent periods of acute distress. Bathing is normally an effective non-pharmacological method to relieve her distress and agitation. During bathing is often when the uncontrolled body movements cease, allowing much needed respite and sometimes sleep.
Preparation for bathing is at present cumbersome, time consuming, and reliant on two people to use a temporary hoist to get her in and out of an extremely small upstairs bathroom. Therefore, a ground floor wet room with an appropriate fixed ceiling hoist will allow manoeuvring from purpose built changing facilities to the bath, and vice versa, single-handed.
Having our own bedroom and wet room is essential to the daily care & well-being of Amber-May, and will benefit the whole family in a much needed way.
One of the great privileges we have had as a church is to have as members this family, and have counted it a privilege to have shared with the them in the challenging journey they are experiencing with Amber-May. As a congregation we have marvelled at the quiet confidence and sacrificial lives they now lead in order to care for Amber-May. And yet, they so clearly love their other two daughters and do all they can so that they do not miss out as they grow up.
As an added extra strain they also need to care for parents on one side of the family who are not only elderly but also have health issues. This is truly an exceptional family who deserve every ounce of support we can give.
Amber-May has severe four limb Cerebral Palsy and is dependent on her parents and carers for all her personal care. Amber-May also has a genetic condition that causes her to have strokes; she has regular seizure activity, which impacts on her functional ability. Amber-May needs to be hoisted for all her transfers to different seating, in/out of the bath and on/off the bed. She is a permanent wheelchair user, and has low tone so she is unable to sit independently.
The family are receiving a full Disabled Facilities Grant which is the maximum available from Statutory Public Funds. Unfortunately this is insufficient to give Amber-May the benefits of all the facilities requested.
As Occupational Therapists we recognise the need for space for furniture, equipment and to move around freely in her wheelchair. The cost of creating this space means that the family require additional funds to enable Amber-May to have for example:
Height adjustable bath
This will enable Amber-May to continue to enjoy bath time where she can stretch and relax her muscles. It will also give the family/carers the flexibility to adjust the bath to the correct height for themselves to bath Amber-May safely reducing the risk of future back injuries to themselves as they are not leaning over a standard low bath.
Height adjustable change table
This again can be adjusted to the correct height for the family/carers to dry, dress or change Amber-May at the correct height for themselves and therefore reducing poor posture and the risk of back injury. It will enable Amber-May to complete all her bathing and changing activities in one area making it easier for the family/carers to carry out these activities.
We agree that these facilities will support Amber-Mays needs well.