Why fundraise? 

It's simple. 

Did you know.. 

A 2014 study showed poverty is especially high among families where there is an adult who is disabled, at nearly 33%. If there is a disabled child, the poverty rate is 40% – more than twice the rate where there is no disability. 

This was pre-pandemic and pre-energy price rises. Households with a disability, especially those which require medical equipment to be plugged in, are predicted to need to make hard decisions with the new costs. Choices that nobody should have to make. Like between life saving equipment being plugged in, and having food to eat. 

The Disability Price Tag

A 2019 report from Scope found that the average "Disability Price Tag" costs an additional £581 per month for families with disabled children. That's not even taking into account the "big ticket, one off purchase" items. 

Read the full article HERE 

Disabled equipment costs money, and it's not always easy to get from the NHS or council. Unless you need it to physically survive I.E breathing equipment or wheelchair if you physically cannot walk, then you have to fight just to be given the opportunity to prove you need the support. 

I don't mean it costs normal amounts either, I mean it COSTS. For example:

A standard high back booster you can get from around £20. 

A disability supportive high back booster is from £200. 

That's a 900% uplift. 

For something that is a legal requirement to ensure safety of children traveling in a motor vehicle. 

Car seats aren't something you get from the NHS or government. No matter how disabled you are. There are grants that can subsidise or pay for them, of course. But they are in high demand, and they can only fund so many. Yet it costs 900% more to keep your child safe if they are disabled. 

Is it any wonder that families with a disabled member are more likely to be living in poverty? 

Our Fundraising Goals 

I want to break down the main things we, as a family, are in most need of and fundraising for. 

Disability Pushchair. 

Basically a pushchair which can hold a bigger weight. 

Our big boy can walk and wants to walk. But not very far. Not very long. And not at any pace. 

On average after 10minutes of walking he begins to complain and will have had a couple of stumbles or trips. Within 20minutes he is outright refusing, crying, complaining his legs hurt, falling regularly and majorly emotionally unregulated as he has multiple meltdowns. 

Can you get a pushchair through the NHS? No

How expensive can a stroller really be? 

For starters, how many people have to buy a stroller for your 4year old? You don't. So you don't have the expense at all… but if you did:

https://www.amazon.co.uk/dp/B08VG5MC7T/ref=cm_sw_r_apan_glt_i_ERSNA13JK8KP98J1YJD4

https://www.amazon.co.uk/dp/B08KJJS63N/ref=cm_sw_r_apan_glt_i_36WQR5RJGZT0WW6FP0AV?_encoding=UTF8&psc=1

That's an extra £150 for something so flimsy looking but would allow us to have family days out which end as happily as they start. 

Therapies 

Physiotherapy

Physiotherapy congratulated us the other day for doing all we can to help Leopold's gross motor skills and body awareness to develop. We have him taking 1:1 swimming lessons and dance lessons once a week. He loves them and we are so glad we have got him good teachers who support us and him with his development. 

We were told there is no point in giving him a physio programme as he learns from his peers (which we agree with) and that in actual fact swimming and dancing are the best therapies he could have. 

But that comes out of our pocket. 

Dance lessons, 30mins, once a week cost £5 a session. 

Swimming lessons, 30mins, once a week and has to be 1:1 for him to learn and for his safety and support costs £30 a session. 

We are paying £35 a week for what is deemed to be "the best physio therapy" and so he isn't even receiving physio support from the NHS. 

Now you can argue we have chosen to do these, and I agree. However, Leopold's intellectual disability means that he most likely won't learn to swim through the school, and it won't be deemed a "problem" until he leaves primary school unable to swim. By that point it could very well be too late to try and teach him. For the same reason he couldn't and wouldn't be able to join a group class, which leaves us with the only option of 1:1 lessons. Which are twice as expensive. So if we just take into account the uplift for private lessons, that's £600 a school year which other parents won't have to pay. 

Speech and Language

Leopold has been discharged from speech and language because he was able to get the "little horse the grapes" 

Yes. The little horse the grapes.

"Apparently" this shows he can communicate and understand as well as a 3 year old should (I did keep pointing out that he was 4, but what do I know? I only birthed him). 

Even the neurologist doesn't agree and feels he needs communication support, but if he doesn't meet the "criteria" then the NHS just cannot stretch to it. 

So the only option we are left with is private. Private Speech and Language sessions once a month for a year, would start from around £1000. 

Garden Toys

I don't mean a bike or a trampoline or a football. 

This is the solid, well built, sturdy play sets. 

Like the wooden framed slides which won't topple as Leo pulls himself up. With a large guarded top platform so he can't fall from the top when he loses balance. And high sides so he doesn't roll over the edge on his way down. 

Most kids will have a slide or a swing, or even both, in their back gardens right? 

By 4 they can use them with supervision but not really any actual help. 

We have some old classic garden toys, but Leo has outgrown them and so they are no longer safe for him. 

Yes we can and do take him to the park. But what about when we are playing in the garden in the summer. Do we leave the unsuitable equipment so his sister can play but tell him he isn't allowed to "have fun" on his own toys? Or do we take them all away so that neither of them can play? 

Let's check out another price comparison:

What about a swing seat? 

Something simple. Most kids could have a plank of wood with some string on a tree. Leopold doesn't have the muscle tone to support his body, so we need an "inclusive" seat. 

https://www.amazon.co.uk/dp/B01JAAG2F2/ref=cm_sw_r_apan_glt_i_1435B922B82DBWJYKC3Y

https://www.rhinouk.com/product/child-full-support-swing-seat/

That's over £200 more. For the seat. Not even the entire swing. 

Cost Breakdown

Ignoring the fact that most 4year olds won't require a pram, just funding the uplift of all of these things will cost us nearly £2000, and £1600 of that is annually. 

Just4Children

So just4children I hadn't really heard of before. So I had a bit of a goggle and found out they are AMAZING. Okay, so raising money for individuals is difficult. Life can be cruel, but so can people, and some people scam and some lie and some cheat, but with just4children it's nigh on impossible. 

They control the money.

Every donation to Leopold's campaign goes through them and into their account and is registered as "for Leopold ''. 

Then when we have the funds, and find the right equipment or service provider we still don't see a penny. The company providing the good or services will invoice just4children. Just4children will then deliberate on the needs and suitability of the products at panel, if they deem it to be in the best interest for the health, development and safety of the child they will then pay the invoice direct. 

We Do Not touch the money. 

That's not our money. 

It's not even Leo's money. 

That is Leo's future! 

Anger - just another stage of grief

I'm just so angry all of the time. 

I can't stop. 

I look at people waiting for a diagnosis and I get angry because they have less problems than Leo but they are being listened to. 

I look at people with a diagnosis and I'm angry because they got it quicker or it's something we are still waiting for. 

I look at people with health insurance, or enough money to pay privately, getting to "jump the queue" and I get angry. 

I'm angry at scientists for not doing more research. 

I'm angry at councils for not acknowledging his difficulties when I tell them. 

I'm angry at therapists who only see a a 5 second snapshot of a "good day"

I'm angry at the doctors who have starting discharging us from their services. 

I'm angry at the clinicians who ignored all the concerns I had when he was younger. 

I'm angry at the world for "punishing" someone so innocent, so loving and caring. 

I'm angry at myself for not fighting harder. 

I'm angry at myself for not being able to conceive naturally, and when I get medical help my body made a mistake with the code copying. 

I'm angry at people who don't see how I struggle. 

I'm angry at those who give us sympathy. 

I'm angry at those who ignore our struggles. 

I'm angry at myself for not being able to give Sibby more of my attention. 

I'm angry at myself for having to split my attention between 2 of them. 

I get angry at Leo for not listening when it's to do with his safety. Then I get angry at myself for getting angry at him. 

I'm angry at people getting more community support, and I'm angry at the people giving them support. 

I'm so so angry…. 

But it's OK…..well it will be. 

But it is NATURAL

I've realised it's just part of the grieving process. 

It's normal to grieve in life. Not just a death. But any major life change, and a new medical diagnosis is no different. 

It's not a linear path, although it's portrayed as such. You can flit between the stages, and the entire cycle can start again each time a new aspect or symptom presents.

Usually you would grieve yourself, but the beauty of a congenital condition is he knows no different. He has nothing to grieve, because he has lost nothing, it is just who he is and always will be. 

Everyone daydreams of their future, and mine has drastically changed. We currently have no way of knowing if he will ever be independent. And it is a scary thought to have. So I have been grieving a future my son never wanted or never even knew of…. Which again makes me angry at myself. 

What are the 5 Stages of Grief? 

1. DENIAL - I was here for a while. Often convincing myself there was nothing wrong and it was all in my head. Even after we got the diagnosis I was in denial for a while. I didn't doubt he had Xia-Gibbs Syndrome, just that it was affecting him. Some things, like communication and mobility, he appears to be a lot less afflicted than others with the same rare condition. So I continued to deny that it would effect him at all.

2. ANGER - one guess what stage I'm currently in?

3. DEPRESSION - this is the other stage I am currently floating between…. It's more from exhaustion I guess. When I have no more energy to be angry, I just get sad. 

4. BARGAINING

5. ACCEPTENCE

The last 2 I haven't yet reached…. I hope I do soon for my own sanity. 

Leopold is fine, he's safe, he's happy, he's loved and he's healthy…. 

So why can't I just let it go? 

Stock photos curtesy of Pexels

P.S. I was very angry when I wrote this one

The Future?

Parents? Have you ever wondered what your child will be when they grow up? 

Whether they will get married? 

Have kids? 

Be a ballerina like they wanted to be yesterday? 

Or a firefighter like they want to today? 

Or will they end up being a teacher because they are good at helping their little brother or sister learn to play? 

I used to have those dreams. 

He would be arguing with his sister about who was going to take me to the shops, because they were both busy with their families and they didn't have time. Leopold was a head chef and Sybelle was a HR manager. Sybelle didn't want kids although she loved being auntie B to Leopolds 3 little terrors…. 

I don't have those dreams now. 

What? to Will? 

I no longer wonder what Leopold will be when he grows up, but more "will he grow up". 

Intellectual disability is one of the key traits of Xia-Gibbs Syndrome, he's currently still learning. He's still developing. Will that just stop? Will it slow down? He's behind his peers now, but could he catch up and then hit a wall and not go further? 

How does it work? When they say "oh he has the mental age of a 12 year old" did he hit 12 and stop aging? Did he not reach a mental age of 12 until he was 36? Did he hit 21 with a mental age of 21 and then slowly regressed? How does it work? How is it measured? I don't like to think of him as having "intellectual disability" . It sounds so final. Like his brain needs a crutch to physically function. 

"Leopold Time" 

I know many may disagree but I tend to prefer "slow". He can do it. He's learning every day. He's progressing. Just not at the same rate as everyone else, he's doing it all a bit more slowly. Don't get me wrong, I'm not a fan of the word "slow" for adults. Once Leopold stops developing then it won't be appropriate. 

So you know how in the Caribbean they have a different measurement of time? Caribbean time. We have Leopold time. It's the speed he develops. And let me tell you it is not consistent. He will surprise us every day with what he takes onboard. Sometimes it's 1 thing, sometimes it's a mountain of things… he's just doing it in his own Leopold Time. 

How old is old? 

I don't wonder what Leopold will be like when he's older. I wonder if he will get older. Currently, the oldest person diagnosed with Xia-Gibbs Syndrome is 60. 60! According to the doctors, this case is an indicator that there will "probably" be no life limitation to this disease. 

Probably? 

Because of a 60year old? 

If you ask a 60year old if they feel they have lived a long and complete life. I bet they will say no. 

Please don't think I'm being heartless as I know some people have conditions in which life expectancy is a lot lower. But to be told "don't worry, we know he can make it to 60 so that's enough" isn't a good enough answer. 

By the time his peers can retire, the new retirement age will probably be in the 80s. If all he could do is make it to 60, and he went to school and got a degree and didn't start working until he was 20 (it makes the maths simpler) he would have only made it through 2/3rds of his working life. Retirement wouldn't even be within reach. 

Or take the Dr's who believe that is a good life expectancy. With their training and specialties etc they don't really start until they are closer to 30 (again helping my maths) that only just puts them through half of their working life. There's so much more life to live, and we have absolutely no idea if we should be planning for it or not. 

Less Answers = More Questions

When I was first told that, not only had they found an anomaly in his genes, but it also had a name, I was relieved. 

Finally we had an answer, we could give it a name, we could find out more, speak to others in a similar situation, even speak to those who suffer with the same… but as the hours, days, weeks and now even months went past following our diagnosis we are left with so many questions and what ifs? 

But there is one "what if" that plagues me more than the rest… 

What if im not a good enough for him? 

What is a rare genetic disease? 

Have you heard of cystic fibrosis? Muscular dystrophy? Huntington's disease? 

Of course you have. You may not know what they involve, but you would have heard of at least one of them. These are all genetic diseases. 

Have you heard of multiple sclerosis? … 

Maybe? This is a rare genetic disease. It was first diagnosed in 1395 and currently approx 2,500,00 people in the world are living with this. 

Have you heard of Xia-Gibbs Syndrome? 

No? I didn't think so. 

Xia-Gibbs Syndrome doesn't make him special, he has always been special.

There are roughly 20,000-25,000 genes in the human DNA. Each gene is made up of a string of bases which are the instructions for the body to make a specific protein. Each protein does its own job and works with a host of others to make our bodies grow, learn, and develop. If you changed one of the bases in the protein "instructions", just 1 little change (like a G to an A) it can change your entire life… and it has changed mine. 

Xia-Gibbs is not just a rare genetic disease, its a new one. First being recognised in 2014, less than 300 people Worldwide have been diagnosed so far.

A drop in the ocean

A medium sized primary school would have around 300 people in it. Can you imagine all the people from your school being scattered around the world, they would be lost in the 1000,000s of others from other schools. They would be bundled into a category with 100s of other schools with different languages and religions and ethics and even dietary preferences. You'll all be treated the same, fed the same, spoken to the same. Sometimes it will relate, sometimes it won't, but nobody will look at you as an individual because amongst 7.7billion people in the world, the 300 from your school aren't even a drop in the ocean. 

Now don't get me wrong, being a small group has its benefits. We have a Facebook group for parents and guardians and there is a real sense of community. We all have to become advocates and experts for our XGS heroes and we are able to support each other to achieve this. 

We fight daily to help our loved ones achieve what we would normally take for granted:

To be whatever they want to be! 

Tell me in the comments what you wanted to be when you grew up ❤

Fantastical Family Fordham

"This is my family. I found it, all on my own. Is little, and broken, but still good." - Stitch

Walt Disney Pictures ; produced by Clark Spencer ; written and directed by Chris Sanders & Dean DeBlois. Lilo & Stitch. Burbank, Calif. :Buena Vista Home Entertainment, 2002.

Well what can I say? My name is Shelly. I'm the 30 something year old wife of Deryk (Del) and mother to Leopold (Leo) and Sybelle (Sibby), and this is our family. 

Me and Del first met back in 2004 when we were working together. Although it wasn't "love at first sight" we did hit it off and became good friends for many years. Then in 2011 our stars aligned and we were both in a position to pursue a relationship.... And the rest, as they say, is history. 

From proposing on our luxurious 2 week holiday in Mexico 2013

To having a beautiful, tudor inspired, wedding in 2016

Followed by a wonderful week long, all inclusive Mediterranean cruise.. (oh but wait I was pregnant, so no cocktails for me) 

So let me explain. Did I plan it well? No. Was it planned per se? Not really. See the thing is, we had been trying to get pregnant for 2years. At 16years old I was diagnosed with Poly Cystic Ovarian Syndrome (PCOS). This comes with a whole host of symptoms and issues, but the main one, the biggy, is infertility. 

See even in this day and age where woman don't need to have a family if they dont want to. Can have a career first. Love who they want. Live how they want. Biology still tells us we are "supposed to make babies". Now I don't mean this to sound crass but we bleed every month (granted mine was synthetic) to remind us we can have babies. We literally have milk makers attached to our bodies. And not in some hard to see place, but literally right under our noses that can just scream "hello, I'm here to feed the offspring". If you don't want children, I guess these things can be ignored. But I did want children. It was all I ever wanted. From day dot I told Del there may be issues and we had a plan of attack. Starting early just gave us a jump start on things. 

Just after our wedding I was prescribed Clomid. It doesn't work for everyone, and there is only so many times you can try as it comes with it's own risk. Round 1 didn't work so the dose was upped. Round 2 I ovulated! If you're pretty sure you've never done that before it is quite an exciting time. I was a chicken. I had successfully laid an egg. Step 1 of the battle complete. I did not expect to concieve on the first successful round. But low and behold... 

I was a chicken god

Not only had I laid an egg but I had concieved and began to create life. 

Throughout pregnancy we had some ups and downs, many of which I'll explain in detail in future blogs. It all ended at 38weeks and 2 days when our hearts melted and we got to meet our little Prince. Our miracle. Our baby. Our world. 

At 9.37am on Sunday 26th November 2017 weighing 6lb 7oz Leopold Arthur Fordham was born. 

High as a kite on a plethora of pain medication, as this wrinkly, gooey life was placed on my chest, I looked into Dels eyes and said;

"I want to do it all again" 

And so we did. In 2020 as the global pandemic hit, we found out we were expecting again. 

40weeks and 3 days of waiting we were blessed with Our Princess. Our completed family. Our baby girl. 

At 11.05am on 13th November 2020 weighing 8lb 11oz Sybelle Violet Fordham shot into this world.

This time, in an operating theatre with lives hangining in the balance I was less inclined to do it again. And why would I? 

My family was perfect and complete! 

Let me know who makes up your family in the comments ❤️

 It's in the name.....

Coming Soon! 

A blog dedicated to the life, struggles and ups and downs of living with a Xia-Gibbs Syndrome diagnosis. 

What is Xia-Gibbs Syndrome? How does it present itself? How has it changed our lives? 

More coming soon....