How to help
So. I feel pretty weird about setting up this page. I’m not a person that likes to ask for help, or for stuff. I’m usually fiercely independent and prefer to be the person giving the things, rather than receiving. Except then we were thrown into weeks and weeks at hospital. Then weeks and weeks at hopsice. Kai went from being awake and well to comatose and seizing, and not well. And the outpouring of love and support we’ve had is immense. However, almost every message or visit comes with a phrase ‘let us know what we can do to help’ or ‘do you need anything?’ or ‘what can we do?’ I was never sure how to answer that, because answering became another thing to think about it with a plate that was already pretty full. So we palmed off the offers of help.
Except that we have some amazingly generous friends who sent us gifts anyway. I once made the mistake of asking for chocolate, and now we are drowning in it. The hospice feeds us three huge meals a day, and cake, so when people have sent us extra – oh my days. We didn’t get a bar or two like I expected, we got a giant box full. Sam mentioned to a friend that we were constantly using wet wipes and muslins. The week after we got a surprise delivery of fourteen (!!) boxes of wet wipes. At 3 packs of 4 in each box, thats 198 packs of wet wipes. We got more bibs and muslins than we could use. In the end, we donated the lions share to the hospice. It was then that we realised that people were going to send things whether we asked or not, and it might be better to direct the goodwill into helpful directions.
So, please don’t send food. No food. No food while we’re at the hospice. I’ve gained so much weight from comfort eating it’s ridiculous. Please stop sending food.
Here is what you can help with:
Sign the petition
There is a petition asking the government to make changing places facilities “mandatory” rather than “desirable” under building regulations. This is important to us, because Kai is forever going to need to help with toileting. As he grows, we’re not going to be able to use to the baby changing station. Right now kids like Kai are being lowered onto dirty public restroom floors to be changed – that is our future right now. So so gross.
Please sign the petition. It’ll take two seconds, and all you need is a UK postcode (like NW6 1SD, say).
HELP ELLY RESEARCH NKH
I’m living in a fog at the moment. There are a hundred and one things I’m trying to do, and a billion things to keep track of. Truth, I’ve lost the thread of so many of his medications, and even wider than that, general research about NKH and what affects what and how. I don’t have the bandwidth. I do have a half built website – the Mikaere Foundation for NKH. I’d like it become the place for NKH knowledge one day. Where it’s clear what is research based, and what is anecdotal, and what research is being done. Right now it’s practically empty with only fragments of information. If you have a spare moment and you’d like to help, there is a list of medications I’m trying to understand. The basics of things like seizures that I don’t get. Alternative treatments like CBD Oil and QRI Reflex integration and side effects like scoliosis and what supplements Kai should be taking, what levels we should be keeping an eye on. There is SO MUCH we don’t know, simply because there isn’t one place to discover all that information. If you have an afternoon and want to help, email me. elly[dot]gedye[at]gmail[dot]com.
This one is probably the most important. We only know so many people, and almost all of you have donated to our campaign (thank you!) – to do more we need to reach those outside our nearest and dearest. We really feel that research is Kai’s future, and we know it’s a while off and a long shot but we live in hope. Every pound we raise has a direct affect on his future, every pound brings his future forward into the realm of possibility. So, if you could help us raise money, even a small amount would be very much appreciated. £20 from a bake sale at your work. Or a £15 from a curry night. A poker night with a £10 buy in, £5 for the pot, £5 for charity. One girl I know bought her manicure set into work and raised a lot of money by doing manicures in her lunch breaks. Run a raffle. Run a marathon. Sell some of your old clothes on ebay. Do a sausage sizzle. Talk to your HR person about making an NKH charity your works charity of the year. Help us. Please help us raise money to research. Our guys future depends on it.
So, the downside to using cloth diapers and reusable wet wipes is the daily load of washing we do. To protect our nappies (we use Bum Genius Freetimes) we have washing powder thats good for everything, has nothing bad in it, vegan detergent. It works well, and doesn’t ruin the waterproof part of the nappy. We also use calgon because London’s water is hard af. We can never have enough washing powder or calgon.
There are a handful of things we don’t know we need until we need them. A bottle brush cleaner, a different sized teat for Kai’s bottles, things that make the dummy clip on to kai’s clothes so he stops spitting out the dummy onto the floor. Amazon vouchers would help here. Also, you’d be helping Elly with her reading habit – being able to pick up or put down a distraction that’s not related to life admin or Kai’s care makes things much easier to deal with.
Abel + cole/sainsburys vouchers
We’re quite well fed at the hospice, but we know that once go home (fingers crossed Kai will recover and we’ll make it home) that juggling home life with new baby life with terminally ill baby life is going to be difficult. It’s already a struggle at hospice where we’re already so taken care of, I can’t image how future us is going to handle at home. If you’d like to make things a bit easier for future us, grocery vouchers would be game changing.
– £20 Abel and Cole Voucher
– Sainsbury’s vouchers can be bought from Sainbury’s.
Okay, I know I said no food. I know I said that. But I’m still trying to breastfeed Kai. Kind of. It’s difficult considering he was in a coma for three weeks and when he came out he lost his suck, but I’m expressing. The problem with that is without Kai to tell my boobs to produce more milk, my supply has dropped dramatically. I’ve tried Domperidone, I’ve tried massage and compression and power pumping. I pump through the night. I’ve tried warm compresses and skin to skin and hand expression. I have tried all the things. ALL OF THE THINGS. I’ve accepted that I can’t express enough to feed kai, so we do half EBM and half formula. I can do half. But that doesn’t mean that I’m not in hope that I’ll eventually be able to return to full EBM feeds. And so I’m eating oats. Because oats has galactagogues in them, which helps with lactation. That and lactation cookies. If someone wanted to make or send lactation cookies I would forever love you.
Donate to our justgiving campaign for JOSEPHS GOAL
Before we went into hospital and hospice, we thought we were going to spend Christmas at home – a small lovely little Christmas for our first as family of three. That’s not how it worked. We spent our Christmas in hospital. Anyway, instead of gifts we started raising money for research. We support Joseph’s Goal, who in turn funds research with Dr Nick Green. This research is Mikaere’s future, if he’s to have one. So when we got an overwhelming response, we were blown away. Thank you to everyone who has donated.
Donate to Shooting Star Chase
We have spent a month at Christopher’s after leaving intensive care. A month is a long time, and the support we receive from the whole team there, the nurses, doctors, PATCH team, the kitchen staff, the therapy team (honestly, I can go on and on and on about how great they are and how kind they have been to us). Shooting Star Chase is a charity that cares for around 700 children with life limiting illnesses, and it costs £27,000 a day to run the two hospices. Most of the cost is covered by donations, so any donation is very much appreciated.
Donate to Action Medical Research for Children
Action Medical Research for Children is a charity that funds medical breakthroughs for children diseases. There are so many rare disorders, and funding for research for childrens illnesses is woefully short of what it could be. Action Medical Research funded the bulk of Dr Nick Greene’s research for NKH. We like Action Medical Research. They make a difference.
Email us for an address to send things to. x
Edit: Thank you thank you thank you thank you THANK YOU for all of the help. We have been inundated with onsies and bibs. We super appreciate the support, I can’t even begin to tell you how much we appreciate the help. Kai is one well dressed little guy!! x