We’re leaning hard into easy sensory activities at the moment, Mikaere’s awake time is precious and so we’re always looking for the best way to make an impact (without it being too much of a mission). Sometimes we pair it with therapy, if it makes things more palatable for our boy.

Music, things that smell good, water, spiky things or soft things. Things that taste good – we’re game.

Recently we’ve been exploring marbles on trays, and wet/dry contrasts. Bells and drums, and beans and rice. We’re also in that phase of memory making, best we can.

Share your secrets, parents of disabled kids – what are you doing with your kiddos right now?? Got any good sensory activities to share?

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#sensoryActivities#disabledKids#yupTryingReels

I didn’t want to write this, really. I was kind of hoping that it would somehow, magically resolve itself, but that hasn’t happened. I said in my last post we’d broken up with Joseph’s Goal. It’s not something we wanted or expected, but when you’re so invested with a charity, there are a few basic expectations:

1. They use any funds donated responsibly, in a manner that supports the shared goal
2. They are respectful and kind to donors, beneficiaries and others, at all times.

Those two (and more!) are laid about pretty clearly in the documentation set by The Fundraising Regulator, the body that regulates charities in the UK. In fact, in their Code of Fundraising Practice (the standards to which charities are expected to behave). Clause 1.1.2 (general behaviour when fundraising) is “you must be polite to people at all times.” (Clause 1.1.1, the first clause, is that your fundraising must be legal).

In short, Joseph’s Goal wasn’t polite to me, personally. Sam’s Grandma donated a few hundred pounds to Joseph’s Goal, as our NKH preferred charity. We received an email from Alan, the treasurer, asking if we knew about it (this is a standard part of their due diligence process).

What I wasn’t expecting was a response from Emma, one of the founders of Joseph Goal to hit reply all instead of reply, and make fun of my character.

It was shocking, and I felt pretty heartbroken by it. Mostly because I thought we were friends. But even if we weren’t, our community is so small. I was heavily invested in Joseph’s Goal (as a means to support NKH Research) as part of a coping mechanism for my grief. When I’m struggling with how distraught I am that Mikaere has NKH, that he’s in pain or is suffering, that he’s having seizures, or my grief about the future we will never experience, about all the things that are affected by parenting a disabled child, about the world at large that is wildly inaccessible to my kid, my default fix is to fundraise.

I can’t cure NKH. I can’t take away my sons pain. But I can fundraise. I can release another book, I can plan the next fundraiser. I can do that. That is something I can *do*

It’s obviously not the healthiest coping mechanism for grief, but it’s one of the many ways I’m getting through, each to their own.

I was so heavily invested in this charity, because it’s personal, for me. So the shock of being made fun of by Emma was horrific. I actually cried and felt that I’d genuinely lost something precious in that relationship. Turns out all of those feelings were on my side only, but nonetheless, I was gutted.

I emailed a response immediately and waited for a reply, a call. But, radio silence.

So, after talking it out with a few people (because I didn’t want to make an emotional, knee-jerk reaction. Not about this), we, as a family decided to move on from Joseph’s Goal. Part of that is the trust was broken. If we can’t trust the charity to be polite, to not make fun of their donors, then they are not the charity for us. We have a certain level of integrity, and without an apology, or even explanation, we were going to move on.

And I think that’s difficult, because we waited. If Emma had called to apologise and said she was having a shit day and here’s where she stood, we probably would have stayed (that’s how much goodwill we had built up with Joseph’s Goal, how much we had emotionally invested in them).

But, that’s not what happened. After enough radio silence, when it was clear I wasn’t going to get a response from Joseph’s Goal. I posted a message to the UK NKH community, asking if there were any other NKH charities we could support. And because we had been such huge advocates for Joseph’s Goal, I posted Emma’s email, too. I didn’t want to have to explain why we were breaking up with Joseph’s Goal. I didn’t want to have to make excuses or cover for their behaviour. But I also didn’t want to exaggerate anything. Just posting Emma’s email I think was enough. Transparent, without any explicit condemnation. It spoke for itself, really.  The community was split, some in support and some not. Each to their own, no judgement.

I also posted a quick message to my personal FB page, asking that if anyone, through their relationship with us was donating regularly to Josephs Goal, to consider stopping. I felt that if we could no longer in good conscience support JG, then our friends and family who were only donating because of our relationship would want to know. So many people have blindly donated to JG, because we did the due diligence and they trusted us. It felt fair, and if anyone had their own relationship with JG, that was fine, they were welcome to make the decision for themselves.

Then, there was a response from Joseph’s Goal, and it was scathing. It was posted from the Joseph’s Goal account (and not from Emma personally), and it was very defensive and passive-aggressive. The main point for me was there was no apology, and no accountability or responsibility taken for Emma’s actions.

The charity was very clear – Emma’s unprompted email that made derogatory remarks about my character was my fault, not theirs. They felt it was deserved. I very much disagree, but it was illuminating to see where they were coming from. Also, as they had responded on behalf of the *charity* rather than on behalf of just Emma, it was clear there was no reconciliation to be had.

I didn’t feel the need to respond, but truthfully, I felt better. I knew where I stood. It was suggested that we make a formal complaint to the Fundraising Regulator (as we have the grounds to), but I don’t think that’s necessary. I really hope that after this, being called out so publicly, Joseph’s Goal won’t be so blasé or mean to their donors. It costs them future donations to do so (we raised £250,000 for Joseph’s Goal. Their response was both appreciative and dismissive of that achievement, apparently, other families collectively have raised over £1million, which genuinely, is wonderful news. I don’t feel like fundraising is a competition between families, you know? It felt like a weird jab to make).

And so, we have unequivocally broken up with Joseph’s Goal. All royalties from the Eva/Charlie books have been moved away, our monthly donations have stopped. Friends and family have stopped their donations, too.

You’ll have seen that we are in the process of registering our own charity with the charities commission. We’ve formed a board of trustees, have policies and due diligence processes, a bank account. It’s all very exciting.

We don’t plan to compete with Joseph’s Goal (if even such a thing is possible). We won’t be doing coin pots in local stores, or managing a large number of members. We’re really lucky that the charity commission has multiple structures we can choose from, and a foundation means we can be relatively lightweight while still being effective.

Part of our fundraising will be passive (like the Charlie and Eva books), which is to say, projects that raise funds without a lot of ongoing maintenance or effort required. Part of our fundraising will be what we usually do, annual online campaigns (like NKH Awareness Day, Mikaere’s Birthday etc). The occasional event (like the chicken nugget challenge, lol!)

But I imagine a significant portion of our fundraising will come from the Team Mikaere community, from you guys. Because genuinely, the bulk of that £250k was raised? That wasn’t us. It was Inifis, the company Mikaere’s grandad used to work for. It was Bazaarvoice, Sams company, during their b:generous weeks. It was friends doing brass band concerts, or choir concerts, it was the Toddington Methodist Church, who made us charity of the year two years running. It was friends running marathons, and holding cake mornings and climbing mountains and walking the Thames Path and holding pub quizzes and race nights and BBQs. It’s friends donating via benevity, or just quietly donating regularly, every month.

And this is why I am posting so publicly, and so transparently. It’s not to vilify Josephs Goal. It’s because we feel responsible and accountable for all those donations made by our friends and family and loved ones. We have an obligation to ensure that any donation made in Team Mikaere’s name is going to an organisation that is responsible, and respectful. An organisation, that in the very least, doesn’t make fun of their donors behind the scenes.

So we’re breaking up with Josephs Goal.  I’m still really gutted about this, but hey ho. Onwards we go. Watch this space as our new charity is formed, we hope you’re join us on this new adventure! X

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For full transparency, I’ve included screenshots, below.

Here is the initial email from Emma, and my response.

Here is the post to NKH UK and the note on my own account:

Here is the response from Joseph’s Goal.

The email Emma mentions is below. It was in response to the (many) emails we got from Josephs Goal, strongly encouraging us to chase friends and family to sign up to the lottery (as shown on in the screenshot of my inbox).