The hare, the tortoise and the mountain. A true story.

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I should have heeded the warnings. Listened to my mind when it was racing at 3am for the hundredth night in a row.  Listened to my body when it creaked with exhaustion getting out of bed at 6am to start another day. Listened to my heart when it beat hard and fast as I rushed from one place to another wondering what I had forgotten this time. Listened to my voice when I snapped at my little girl for taking too long to brush her teeth in the morning.

But I didn’t. Because I didn’t want to hear it. I didn’t want to feel it. And I didn’t want it to be real.

Because as women we are supposed to be able to do everything, right?

I wanted to prove that I could. That against the odds I could still be a high achiever with a fulfilling career, hobbies I enjoy, a comfortable home and a happy family life. I wanted to prove that I could do all that while also caring and advocating for my disabled child and others like him as well as ‘living the dream’ a la Coast Magazine by the sea and holding the fort in one piece while my husband works away.

That I could take in my stride juggling school runs and homework and changing and feeding and administering meds and chasing appointments and test results and worrying and worrying over whether the latest chest infection or seizure would see us hospital bound again, while maintaining a professional and super productive work life in my job that I love.

And keeping house. And remembering to fill in the ticket requests for the school play on time, ballet and PE and swim kits and guitar sent in on the right day and party invitations RSVP’d.

A race against time every morning to get us all up and out the door, clean, dressed and fed. Coffee. To school on time. Traffic. To work. Coffee. Try to be professional and brilliant. Supercharge every minute with mindblowing feats of productivity. Squeeze more out of every day than should be possible.

But now it’s 5pm and it’s nowhere near all done.

Traffic. Traffic. School pick up just in time. Petrol pit stop and spelling practice in the car.

Home.

Children fed. Pyjamas on. Meds given. A quick smile and a cuddle. School bags emptied and filled. Post opened. Outfits ironed. Cats fed. Meals planned and bought online. Bins emptied. Piece of dry toast and some chocolate eaten for dinner. Feel my back twinge while I carry a growing boy up to bed.

“How many more times can I do this?”

Sitting in a dark bedroom every night while my anxious seven year old finds every reason not to let me leave or to go to sleep. She fights it. In the end, she sleeps. I creep out. Quick tidy up. Dishwasher loaded, floor swept, counters wiped, dryer emptied, laundry folded. Letters from the hospital read and filed. Emails to the adaptations manager, the social worker, school, a campaign group or two.

Work emails caught up on. A work project finished off in the quiet that only an evening alone on the sofa can bring.

“How many more times can I do this?”

Tweets tweeted. Sometimes about gin and sunsets. Usually about loos.

Worry about how we will ever go out as a family when we can’t change Orange in the boot of the car anymore and there are fewer bench and hoist toilets in the whole of the UK than there are normal loos in Wembley Stadium alone.

Realise I can’t fix that overnight and instead end up reading an article about terrible care homes in Cornwall and worry about Orange’s future. Wonder if I can live to 120. Realise I can’t and that I definitely won’t if I keep eating dry toast and chocolate for dinner. And worrying.

Worry some more. Blank out the worry by scrolling through Facebook, Twitter, Instagram, mumsnet and repeat. Social media oblivion.

Sleep. Perhaps.

Repeat.

I had come to think that this was normal. I had also come to think that if I couldn’t also fit in shifting three stone with an intensive fitness regime and clean diet, expanding my mind each night with the latest Ted-Ex talks and Booker shortlisters while also trying to write my own, being a solid support and confidante to those around me in their times of need, giving back to the communities in which I am a part both in the flesh and online, and renovating and decorating our tumbledown house into this schedule, that I was a failure.

In a word, lazy.

I had heard and read too many times that all working parents face the same challenges and come to believe that I should just be able to get on with it without complaint and without dropping a ball. Because that’s what I thought the world tells you it’s possible to do and that if you can’t, you are somehow second rate.

That if I felt tired it must be because I am a weak individual and need to toughen up. That if I felt sad it must be because I am entitled and ungrateful. That if I found something hard it must be because I am stupid or lacking in sheer determination and grit that others seem to have.

That if I read enough motivational self-improvement books and stared at feel-good Instagram posts I would find my way to the top of this mountain.

Because anything’s possible, if you strive hard enough, right?

But this week I have realised that I have been trying to sprint up the mountain. And sprinting up a mountain gets you nowhere fast, other than altitude sick.

On Thursday, that’s exactly what happened. A difficult conversation at work that I would otherwise have taken in my stride tipped me completely over the edge.

For the first time in years I actually cried. And then I couldn’t stop. An avalanche on the mountainside that threatened to bury me alive.

The irony of this occurring inside a mental health unit at work did not escape me. But in fact, now I am grateful. Because it shocked me into realising that I need to slow down from that sprint if I am ever to get to the top and enjoy the view.

To remember that the hare did not win the race, the tortoise did. And that this is not a sprint. It’s an ultra-marathon.

I was never any good at long distance running at school. I’d always start too fast and get puffed out past about 400 metres. I have always been the hare, never the tortoise.

All through my life at this point I have given up and started again. Abseiled down the mountain to try a different one instead. Run to a different start line to sprint along another track.

But this time I need to find the right way to keep going. Not just because there is no choice but because I also want to.

I need to have faith that I’m in the right place, with the right people, doing the right things. Because in my heart, I know that’s true.

And so I need to adapt my pace. While I am pretty terrible at long distance running I know I can get there in the end if I slow right down.

Even when there are steep hills to climb.

The times I have tried to run since moving to Cornwall have taught me that. If I try to be the hare I never make it even half way up the hill out of the village. The hills here are steep but the views from the top are breathtaking. I have learnt that the only way to get there to enjoy them is to be more tortoise. To jog or even to walk before I sprint.

And from time to time I know I have to seek a little rest and sometimes shelter along the way. To take refuge from the wind and rain or simply to take a breath and enjoy the surroundings.

So as a new week starts I will try to slow down in the knowledge that this will help me get to the top of the mountain, not hinder me.

Because if I don’t, I will fall off a cliff. Thursday showed me that the edges really aren’t all that far away.

Thank you to my husband, my boss, my team and my friends Lucy, Ali, Effie and Alex for listening and showing me it’s ok to say you’re not ok, that talking about it is a good thing, and  that trying to be superhuman is stoopid. 

 

 

 

 

The Money Pit: Making a Home Fit for an Orange

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What makes a home?

Four walls and a roof over your head? A place that you love, where you feel safe and happy? Somewhere that you can make your own?

Filled with trinkets, dust and clutter or Kon Mari’d to the hilt, a garden with pinstripe lawns and bursting with flowers, or over flowing with children’s toys, are our homes not are an expression and extension of ourselves, who we are, and the people, experiences and things that are important to us?

If you’re a Five Year Planner, a Zombie Apocalypse Prepper, or a fan of lists and spreadsheets (like I am) you will understand how moving into a very old house desperately in need of a top to toe refurb (as we did) and not being able to do it, or even plan properly for how you might do it, (as we haven’t) is enough to make you want to run away, drink gin and live in a tent.

Four years since we moved in, really, I just want to put the whole house in Room 101 and hide under canvas on a cliff top. Right now our home unabashedly tells the story of us floating about in limbo, of hopes as yet unrealised and of best intentions to help from the council that failed.

Because as much as I’d like to start re-landscaping gardens, ripping out kitchens and replacing windows, we have had to hold fire on everything but refitting the makeshift loft extension because we have to adapt our house for Orange. So he can do simple everyday things like get in and out of the house, move around the house in his wheelchair, sleep, eat, bathe and dress.

Our first attempt at adaptations didn’t go so well. You might say.

Expensive. Tearful. And full of F words and C words I don’t wish to repeat.

For the last two and a half years, our garden has been impersonating an industrial wasteland (we are sorry, beautiful Downderry), with lifts that don’t work how they should, concrete paths that shouldn’t have been laid and a striking 1,000 litre plastic oil tank as a stand out feature piece, sitting taped and cracked, proud and high like a mocking memorial to the whole sorry, and expensive, process.

“Beautiful sea view you got but, you know, I just adore that tank!”

We didn’t want lifts in the garden just for kicks. For the Waitrose man to bring the shopping up in or for snails to find comfy homes. After falling down the steps carrying Orange, we needed adaptations and we needed help from the disability adaptations experts at the council to get them right and help us fund them via the national Disabled Facilities Grants scheme.

A system supposedly set up to help people just like us.

And yet the system failed us when we were at our most confused and afraid, with a little boy who couldn’t walk but no-one could tell us why or whether any of the gruelling physio and therapies we were instructed to do every day would actually ever help.

An ill-conceived job, put into the hands of people who were quite happy to take the council’s Disabled Facilities Grant money and disappear off on holiday to Goa, leaving ancient and decrepit workmen who should have long retired to complete a job they were unfit and unskilled to do.

I am relieved and happy to say that the adaptations team at Cornwall Council have made a lot of changes to how they do things since our experience. There are some dedicated, kind and thoughtful people in their team who have listened and who really do want to make things better.

But that doesn’t change the fact that the cost to fix this mess and to build a safe and functional way in and out of the house for Orange is eye watering.

And like a string bean, the boy just keeps growing. It’s not just the outside that needs adaptations, but the inside of our house now too.

I have walked miles around my own home over the last couple of years, trying to visualise where a through-floor lift might go, how we might fit in an adapted bathroom for Orange, where ceiling track hoists might go…

Do we need to widen doors? Move the stairs?

Change bathrooms into bedrooms and bedrooms into bathrooms?

What is that pipe? Where does it go?

Do we need to lift the flagstone floors?

How much will it cost? Can we afford it?

Help.

And so four years in, we are campers in a home we haven’t yet really made our own. With the exception of the living room which has been adorned with the permanent marker of a small girl who thought the ambiance would be much improved by a giant black lighthouse on the wall, we can’t do anything much at all until all the adaptations are designed, built and paid for.

All tent jokes aside, we have considered moving. We really, really have.

But it doesn’t solve the problem that whatever house we live in, we will have to adapt for Orange. And there really are no step-free bungalows on a flat piece of land, with wide doorways, hoists, adapted baths and enough space for a growing family anywhere within a sensible commuting distance of the children’s schools and work.

There just aren’t.

In truth, at £30,000, the DFG is a dinky pebble in the ocean when the cost of a lift alone can be £20,000. Even with a DFG for the outside, and a DFG for the inside, we will need to find money in the tens of thousands to get the jobs done and have a house that is functional, habitable and doesn’t look like a hospital. Or an industrial wasteland.

It’s just the way it is.

And so with blind faith we are leaping into the chasm of asking the bank for large amounts of money and hoping that eventually we can one day pay it back.

Because what is the choice? Really there is none.

When people are surprised that I have fought to maintain my career, that I work a full time job while being a parent carer, this is why.

It is one of the reasons why I don’t take kindly to criticism of me being a full time working mother, from those who think I should be a ‘rock’ at home for my children, or that I have ‘made a lifestyle choice to work’ (yes, there are still people who think this way).

It is why I will continue to campaign for the rights of working parent carers to hold on to their jobs when people and systems around us tell us that we shouldn’t or that we can’t.

Because disability is expensive. And the more disabled you are, the more expensive it is.

And so until I can galvanise to campaign for Disabled Facilities Grants to cover the actual cost of adaptations (because right now, they don’t touch the sides), we, and many other families alongside us up and down the country, step, headlong, into the Money Pit.

Wish us luck.

 

Promises to a friend

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Words. Words have the power to build us up and to tear us down. They bring joy and laughter, sometimes sadness, sometimes hope. They can unite us, divide us, inspire us and ignite us. They can connect us and help us to understand our world, this weird, wonderful, bewildering and cruel world.

It’s one of the reasons I started this blog. There were words in my head that needed to come out. I hadn’t known what to do with them. They flew this way and that looking for a home and never quite finding a resting place. Finding a connection in the words of others encouraged me to start writing it all down. And the connections grew, blossoming behind the screen into friendships.

Over time I imagined this would become an uplifting, hopeful place, full of laughter, encouragement and joy as we traced our path through raising Orange, giving other families hope too, perhaps, that this will be ok. You are not alone. There is always hope.

But it can be all too easy to paint a picture. To gloss over the hard bits for fear of bringing people down or perpetuating the myth that life with a disabled child is nothing but tragic and awful.

Which it isn’t.

There is joy, there is hope, there is laughter, there is love. But there is also pain, there is also fear, there is also sadness and there is also loss. Because that, right there, is life.

Pretending everything is marvellous all of the time would be, of course, ridiculous. But more than that it can lead us to feel that we should always be thankful and joyous and full of gratitude and aren’t we lucky all of the time.

That the answer to ‘how are you?’ should always be ‘good, thanks‘. That we should quickly move on from difficult emotions well before we are ready.

While a little bit of gloss can be uplifting, go too heavy and it quickly becomes isolating. Silencing.

Sometimes when people are in the greatest of need.

Because words are at their most powerful precisely when the chips are so far down the cliff you wonder if they haven’t actually drowned. It is in these moments, when simple words on a page, told truthfully, letter by letter, can keep your head above water, even when your heart is in the sole of your boots.

For much the same reasons as my friend Alison, I haven’t written anything since June. In her beautiful and honest writing about friendship after loss, she has captured tenderly why neither she, nor I, have written over the summer. Our heads and hearts were full of someone else’s story, that wasn’t ours to tell.

But also, I really didn’t know what to write. Because I panicked and wanted to gloss. To paint over the pain, the fear and the loss facing dear friends to make it go away. That if I just imagined hard enough that it would be ok, if I hoped high enough, that a miracle would happen, that magically life would somehow return to normal and they wouldn’t be saying goodbye to their little boy.

I couldn’t do that.

But I can do this.

I can promise to listen.

I cannot know the depth of your grief but I can see you through your tears. I am here. I will ask you how you are, don’t hold back, dear friend. I am here.

I can promise to be patient.

Grief is the proof that you loved well, dear friend. Time has no place here in judgement. While you grieve, I grieve with you.

I can promise to lift you up when you are ready.

I cannot know what the future will be, dear friend, for you nor I. I cannot try to fix the unfixable. I do not have the answers. There is no handbook. But I can be here beside you and I promise to be present. I have no expectations of what your grief should bring. If you need to vent, I am here, if you need to cry, I am here, if you need to laugh, I am here too.

And when you are ready, dear friend, I will be here with words of hope and encouragement. I may not always get them right but I promise to try.

Most of all, I can promise not to gloss.

So, dear friend, I will not try to distract you from your grief nor hurry along your tears. While I am far away in distance I am with you in this. I will not shy away because I cannot find the words.

“Remember, that grief never asks you to let go of love”                         Ashley Davis Prend

You can vote for my brilliant friend and her honest, raw, funny and totally gloss free blog Are You Kiddingney in this year’s Mumsnet Blogging Awards.

 

A very public (in)convenience

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This post first appeared as a guest post on the Cardew Physio & Performance blog as part of a series of blog posts promoting awareness of continence issues during National Continence Week.

I don’t know about you, but one of the reasons I’m not at Glastonbury this weekend with all the other mud-coated revellers is because I can’t quite get my head around the festival loo situation. Queuing up in the rain to use a long drop with no toilet paper is enough to put me right off going to Glastonbury, even with the most star-studded of line ups or luxury boutique camping on offer.

But can you imagine if there were no toilets at Glastonbury at all? Or if there were toilets that were only accessible to people over the height of 6ft 5? Or that would collapse if anyone over 10 stone entered the cubicle? There would be uproar among the hundreds of thousands of Glasto fans.

Or, quite simply, people wouldn’t go.

We have become used to toilet facilities being available to us pretty much wherever we go in the UK. Public toilets began being introduced in London in 1851 and since then have become a familiar feature of cities, towns, villages, attractions, public buildings and restaurants across the country.

It would be unthinkable to go for a day out in a public place or to a major event and there not be a toilet available, right? Wouldn’t it?

Unfortunately for some of the most vulnerable people in our society this is not the case. Until the advent of the Changing Places campaign in 2006 there were no toilets available in the whole of the UK for the ¼ million people who cannot use standard or typical accessible/disabled toilets.

According to Changing Places, this includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, severe physical disabilities as well as some older people. A quarter of a million people.

This quarter of a million includes my son, Lawrence, who is five years old and wears a pad because his disabilities mean he does not have adequate control over his own toileting, or the ability to transfer to a toilet, even a ‘disabled’ one. He needs to be changed by a carer, regularly, throughout the day.

When he was tiny, we used the baby changing facilities like every other parent. Luckily, these have been installed in most public places and restaurants across the country because managers have recognised that families with young children are an important and valuable part of their customer base who have money to spend.

Unfortunately the same is not yet true for severely disabled people. A quarter of a million people. And their families.

In the vast majority of public places in the UK, the place where severely disabled people get changed by their carer is the toilet floor of the disabled loo. The filthy, often urine-soaked and dirty, toilet floor. A place that most people would only want the soles of their shoes to touch.

This is the now the reality we face with our little boy. The same reality faced by vulnerable, severely disabled people and their carers across the country. It is not safe. It is not dignified. It is not kind. It is often the reason why severely disabled people and their families are limited to local short trips out only, or why they very rarely leave the house at all. For many carers, lifting a disabled teenager or adult from a wheelchair onto the floor of a toilet and back again would quite simply be impossible, never mind the filth.

What people like our little boy need is a toilet that can be used in safety and comfort for both him and for us as his carers, which has more space than a conventional disabled loo and the right equipment – including an adult sized height adjustable changing bench and a hoist.

Changing Places have made great progress on campaigning for suitable toilet facilities for severely disabled people over the last 10 years, but there are still less than 1,000 across the whole of the UK. In Cornwall, where we live, there are only 10 Changing Places toilets in the whole of the county.

I am delighted to say that this will soon become 11, as a result of a local parent the new (and fabulous) Cornwall Services on the A30 has understood the need for these facilities and is fitting one as I type.

I am, though, sorely disappointed to see that in all the £17.6 million revamp of the Hall for Cornwall, there are currently no plans to install a Changing Places toilet, despite vocal campaigning from parent carer and disability groups.

John Lewis (a favourite retailer of mine until last week) responded to Changing Places a few days ago to say that they ‘didn’t have space’ to fit a Changing Places toilet in one of their flagship stores that has over 70,000 square footage of retail space. Imagine if they said they ‘didn’t have space’ to fit regular toilets, or if they said they didn’t have space for a café, or a shoe department? Unthinkable.

Already, even with Lawrence being quite small, we are finding ourselves planning family days out and long journeys around where there is a Changing Places toilet. We love the Eden Project, because they have a fabulous Changing Places loo, as do the Life Centre and Drakes Circus shopping centre in Plymouth. But beyond that, it’s pretty sparse. What will we do when we can no longer lift him ourselves and when we get sick of carrying around a mat soaked in urine from the toilet floor?

We will be isolated.

You see, it’s not just the person with disabilities who suffers when there is no toilet they can use. The lack of Changing Places facilities isolates entire families too. Families who have money to spend at your restaurant, shop, theme park, hotel or festival, just like everybody else.

So please, if you are a restaurant owner, a hotel, shopping centre or theme park manager, or a local authority public convenience planning officer (do they even exist?) then please, please fit a Changing Places toilet. Not only will you see the investment repay itself with new loyal customers but you will be changing lives.

Oh, and by the way? If you’re heading to Glastonbury this weekend and one of your party is severely disabled, you’ll be thrilled to hear that the festival has a Changing Places toilet in the Spring Ground Accessible Campsite. For everyone else, if you’re not keen on the long drops, you might want to check out the compost loos… Good luck 😉

It takes (more than) a village to raise a child (with an undiagnosed genetic syndrome) #thankyouteamorange

When Orange was not quite two, I remember counting in my head the number of doctors, nurses, specialist consultants, therapists and support workers that had been involved in our lives as a result of his difficulties since he was born. I was astounded when I got to 46 and was sure that I wasn’t done counting.

Since then, Team Orange has grown considerably. I stopped counting some years ago but in his five years I can be sure that well over 100 and probably over 200 health and social care professionals have been involved in Orange’s care to date. And that doesn’t include the hundreds of administrators and officials who we speak to day in day out to coordinate appointments, medication reviews and prescriptions, equipment deliveries and repairs, blue badges, disability benefits and education, health and care plans.

That’s an awful lot of people to welcome into your lives. An awful lot of people to open up to, to place your trust in and to rely on to do what’s needed for your child. An awful lot of people who need to work together, in a coordinated fashion, to deliver the right support and care for your child and for you, when you have no idea what you are doing and are learning as you go.

If I have learnt anything in raising a child who has severe disabilities and complex medical issues but with no diagnosis for his condition, it is that I cannot do this alone. It is too big a job.

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While I know that I am the world expert on my boy, I am not the world expert on epilepsy, hypotonia, dysphagia, arachnoid cysts or scoliosis. I also need to sleep, work, take care of Orange’s sister, be a wife, sister, daughter and all the other ‘normal life things’ that can get swept aside when you are a parent carer. I can only do ‘normal life things’ if we have help.

As much as there are (many) times when I just want to snuggle down with Orange and hide away from the perpetual merry-go-round of appointments, medical examinations, reports, meetings, phone calls, letters and assessments, I know that I would be doing Orange and all of us a dis-service if I didn’t build a solid team around us of people and professionals who can help. And lead this team to deliver what Orange needs to be safe, happy, well and fulfilled in his life.

When you have a child who has complex needs but no diagnosis there is no well-trodden pathway, no yellow brick road to follow.

No-one will show you the way.

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Here are some things I wish I had known, that would have given me confidence, in the early days of us discovering Orange had a syndrome without a name.

You will have to cut your own path, often in a forthright and determined fashion, even when you are at your most worn out and frightened. You will have to do this to access simple things like the right schooling, essential medical support, suitable childcare so you can work, or fit-for-purpose home adaptations for basic daily care like having a bath, or essential tasks like leaving the house. You will do it, because you are strong and because no-one else will.

Lots of people will enter your lives that you didn’t expect. Some invited and some uninvited. Sometimes this is exactly what you need. Sometimes it will drive you nuts. Often at the same time. Roll with it but know that you can press pause if you need to. You are in control.

You will learn to trust people. You will also learn when not to. Your gut instinct is always right. Use it. Lean on the people who you trust and ask for a change of professional in circumstances where you feel there is a lack of trust or understanding. You will know when you need to do this.

You will learn to ask for help (sometimes unceremoniously). This is something I wish I had learned sooner. It took me four and a half years to actually open up to a professional who could help us get the respite care we needed to keep our family on an even keel. It wasn’t pretty. Something akin to hanging a dirty nappy on the door, which one of my favourite SWAN bloggers made famous with her post on Complicated Gorgeousness about the lengths some parents have to go to in search of respite care. It shouldn’t be like this but often it is. Ask for help. Loud and clear. And do it now, don’t wait until you are at crisis point.

You will see the best in humankind and it will make your heart swell. And sometimes you will see the worst and it will make you want to sink into the ground. But most of the time you will just see people, normal people. Some who can answer your questions, some who can’t, and plenty who want to ask fountains of questions of you. Consultants, educational psychologists, social workers, parents of disabled children – these are all groups of people I had preconceived ideas about. And in the most part, I was wrong. We are all just people, for the most part trying to do our best in life and be fulfilled and happy. Remember that always.

You will find people just like you. You are not alone. There are thousands of families with children posing similar quandaries to professionals all over the world, who have complex conditions and no diagnosis, despite years of testing and the best, cleverest minds in genetic research on the job.

These people will hold you together when your child stops breathing and you are in an ambulance racing to hospital with a child in status epilepticus, not knowing if he will pull through.

These people will help you when you have to fill in 40 pages of disability living allowance forms that are not written with complicated, undiagnosed conditions in mind and you have no idea where to begin.

These people will celebrate with you when your child takes a small step that for them is a gigantic leap. Putting a spoon in their mouth for the first time, turning the page of a book, smiling in response to your smile, or squeezing your hand with affection.

These people will laugh with you, cry with you, rant with you, stand and campaign with you at Westminster, share your ups and downs, solve problems with you, hold your hand and drink wine with you.

These people are everybody who makes up the community that is SWAN UK, the small but growing charity that supports families who have children with undiagnosed syndromes.

Through SWAN UK we have found our people. Without them we would be lost.

Friday 29th April is Undiagnosed Children’s Day. On this day, we celebrate the support and love of SWAN UK, raise awareness of undiagnosed genetic conditions, and reach out to other families who may be feeling lost, or alone and unsure where to turn to for help.

Every year, as many as 6,000 children are born who have undiagnosed genetic conditions. They, and their families need your help. SWAN UK cannot keep going and keep delivering the support that it does without funds. This is why Mr K ran the London Marathon last weekend for SWAN UK, raising over £3,000 for the charity. You can still sponsor him here. Thank you.

I would also like to say thank you to all the professionals who are part of Team Orange, who help us negotiate this untrodden path. There are too many to name, but a special thank you goes to Orange’s school team, his school transport escort, his disabled children’s social worker and his school nurse, who provides our respite care. Thank you. We absolutely could not do this without you.

To end, here’s a little video with some great tips for professionals on how you can help families who have an undiagnosed child, and some lovely stories of professionals who are worth their weight in gold, who have gone above and beyond to help families with undiagnosed children.

Happy UCD2016!