Our daughter Keira has severe cerebral palsy, her needs and equipment are outgrowing our space.
Taranaki
Asking for help and putting myself out there like this is terrifying but my husband Jason and I have decided it’s time to ask.
2 years ago, Keira was born 9 and a half weeks premature. She had a brain bleed in the womb which caused hydrocephalus (excess fluid in the brain) and periventricular leukoma (inoperable cysts in the brain matter). As a result of these, at 6 months old she was diagnosed with severe cerebral palsy with seizures.
For Keira this means stiff limbs, floppy trunk and neck, poor vision, excellent hearing and lagging communication skills. Her physical development has been described as that of a 6 to 8 month old, except for her head control which is only a 2 month old. Despite this she is a funny and cheeky little girl, she just cannot sit or move unassisted, or communicate very well. How much she will improve is the unknown.
Keira already has a lot of different equipment for supported sitting and standing, with walking frames and probably wheelchairs in her future. These are funded by the ministry of health but we have already encountered things they don’t fund, such as the blender we had to get to puree the food that she gets via her gastrostomy (basically a valve in her stomach which tubes connect to). She can eat a small amount, but most of her nutrition is via the gastrostomy.
There’s a lot going on, too much to write it all here (our blog has some more detail but still only touches on the day to day) but we’ve talked to others in the cerebral palsy society and have a pretty good idea of what we will need to set up an environment that gives Keira the best chance of thriving.
What the funds raised will be used for depends on how much is donated. We have a long list but not enough money to cover it all anytime soon.
We have an immediate need to get a new car, I currently drive a ford festiva miniwagon which is on its last legs. We need a car with a massive boot, to ferry her equipment to appointments and early childhood education, and a large back-seat in case she needs hip surgery soon.
Then whether we start to make changes to our current home or try to find or build a home depends on the amount raised.
Keira will need a large bedroom, with an ensuite with a wet floor shower and room for a hoist. Apparently the ministry only funds freestanding hoists, not ceiling mounted, so these have a large footprint. We’ve been told a storage area – like a walk in wardrobe - for her equipment when not in use would make using spaces a lot easier.
Extra space for physiotherapy, that doesn’t have to be packed up and moved multiple times a day is also on the wish-list. We can manage now, but as she grows older she will obviously need more space to stretch out and do exercises.
Our existing home needs a new roof, and eventually ramps built. Ramps and wet-floor showers are funded, but only once in the affected persons lifetime so we need to make sure we are in the right home first.
For either a walking frame or wheelchair some doorways might need to be widened and floor level differences made smoother. If we stay in this home we will need to purchase smaller furniture as there will not be enough room for her to turn around in the equipment.
Either a small butlers pantry or similar area for sanitizing her syringes would also be good. Even just a bench that can be closed away from flys and food debris would ideal. Keira has multiple medicines everyday via the gastrostomy so syringes are washed, steralised and air-dried in between uses.
We’re not totally broke, if you think there is more deserving causes (which there are!) then please donate to them instead. We just feel like we are one car breakdown or illness away from disaster and really want to do all we can to make Keira’s life easier. It’s never going to be easy for our family, but if we can make her immediate environment suit her conditions then part of the battle is won.
Funds raised will be used towards caring for Keira as mentioned above - car, home alterations.
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.