And Breathe.

It’s been about a month now since Tilly was diagnosed with GAMT deficiency an incredibly rare metabolic disorder and I’m still no closer to putting into words how I feel about it.

I have spent the last few years holding my breath and waiting for the day I would watch the first love of my life turn into a shell. I was told she probably had a degenerative neurological condition like Rett syndrome. I spent years waiting for my worst nightmare to come true. The horror of waiting for my child to lose all of her hard earnt skills was similar to that feeling when you’re nauseous but can’t be sick. There’s no relief. It is a relentless and crushing feeling. I was holding my breath. Outwardly positive, inwardly waiting for the worst.

But that isn’t coming. Tilly doesn’t have a degenerative neurological disorder. They may even cure her epilepsy. My nightmares of losing her to a seizure may come to an end. I don’t need to tell you that the thought of losing my child makes my lungs burn and my throat close over.

How do you ever put into words how it feels to go from waiting for your child to lose everything to being told she will develop and the future should be bright.

It feels like I can breathe again. Like I can inhale and actually fill my lungs with the hope that the future for my best friend on the planet will be more than I could have ever hoped for her.

I have my sad moments. It’s incredibly tough to know that I could have saved her from all of this if it had been screened at birth. She didn’t have to be disabled, she didn’t have to be epileptic and she didn’t have to spend five years trapped in her own body. Treatment is too late now to save her completely. She will always have profound special needs. But she didn’t need to.

That hurts.

Tomorrow Tilly and I (and my mum) are off to London to meet her metabolic consultant and start treatment. I will be walking into that hospital with my lungs fit to burst with hope.

Hope for the girl I’ve been waiting to lose for such a very long time. The girl I get to keep. ❤️

1904 Days. D is for Diagnosis.

It took 1904 days for Tilly to be diagnosed with the rare metabolic disorder called GAMT deficiency. 1722 days of waiting from when I realised she wasn’t quite right at six ish months old.

Almost 2000 sleepless nights. Almost 2000 days wondering what the hell I did to cause this. Almost 2000 days of holding my breath. Waiting for them to tell me the neurologists were right and it was degenerative, that it would leave her quadriplegic and unable to do any of the things she loved. Waiting for them to tell me it would kill her. That I’d have to live my life without her one day. I can’t tell you about the nightmares I’ve had. The words won’t come. Just know that they were the type of nightmares that woke me in the middle of the night sobbing and struggling to breathe. All I ever wanted in life was a daughter, I couldn’t let myself think about losing her. My subconscious thought about it for me, I drowned in my dreams instead.

Drowning. Who knew you could feel like you were drowning whilst sat in a hospital room a few miles away from the sea. You can. You can sit there and feel the air leave your body as the professionals tell you that your child’s EEGs look bad, that the medications aren’t working, that things are getting worse. I have sat and silently drowned more times than I let myself recall. The pain is unbearable, the searing heat that rips down the back of your throat whilst you try to sit there and look composed and nod in all the right places…

Two weeks ago I had a call from Tilly’s geneticist. They had found a diagnosis. GAMT deficiency. She wasn’t going to regress, she wasn’t going to live in her wheelchair, she wasn’t going to die.

Because there is treatment for her condition.

My girl may well be able to talk, run, sing, jump, shout and do all the things she wants to do.

Again, I can’t describe how I feel about that. The joy is so pure and so unbelievably amazing that there aren’t the words. Never in my wildest dreams did I ever think she could be treated. Never.

Never did I dare to believe I could go on to have more children. But I can now if I want to.

It took me approximately 48 hours to realise the full extent of Tilly’s diagnosis. I was and am so happy about treatment options that I glossed straight over one glaring fact.

If it had been diagnosed at birth, she would have been saved from all this.

Treatment from birth has led to children being either unaffected or only mildly mentally “impaired”.

The sheer fucking unfairness that my child didn’t have to be like this. That she could’ve been the girl she was meant to be. That hurts. That hurts like a knife to the stomach. One blood test at a few days old and I could have saved her from all of this. She didn’t have to be locked into the prison that is her mind for all these years. She could’ve been free.

Dwelling on that will kill me. So my focus is on gearing up ready to start her on treatment and look forward to all the improvements she will hopefully make on it. She will never be “cured”. She will never not have severe learning difficulties but she will achieve everything she wants to. I feel unbelievably lucky that my child’s diagnosis has given her a very exciting, new future. I know full well that 99.99% of the time, this isn’t the case. In the back of my mind I am thinking of the parents who didn’t get this news. Who were told their worst nightmares were coming to life. I only wish I could share this with them. No parent deserves to go through that.

I have always said my girl would rule the world and she will, in her own wonderful way.

Bring on the future.

The Girl with No Friends

There’s a lot of things you take for granted when you have a child. That they’ll talk, walk, dress themselves etc. One thing I took for granted is that my children would have friends. I met my oldest friends aged two and they’re still stuck with me now after all.

But when you have a child with SEN, it’s not that easy.

One of the hardest things I’ve ever had to read about Tilly was a report about 18 months ago that stated that other children were scared of her. 100% true and 100% justified but utterly soul destroying. Tilly always wanted to have friends but she couldn’t behave appropriately around other children, her love for them involved ripped out chunks of their hair, skin and faces. It was pretty horrendous. There was a lot of blood. No exaggeration.

Last summer after eighteen months of various epilepsy medications with hideous side effects that caused her to be incredibly violent and volatile I decided enough was enough. She wasn’t happy. I took her off the massive doses of drugs she was on.

Best decision I ever made. The difference was almost immediate. Her brother could be around her for the first time in his life. I could go to the toilet and not have to close her into her bedroom to keep him safe from her. They have Friday night sleepovers in her bedroom and curl up together. These are siblings I had to separate with a metal room divider at one point to stop her from tearing him apart.

Tilly started special school in September alongside some of her peers from Nursery. They remembered her and rightfully so they were scared. A few months Tilly was chosen by another boy in the class as his friend during a friendship activity. I cried when I found that one out.

Tilly’s behaviour around other children improves every day. Through the impressively hard work and determination of the staff at her school, she has been taught and has learnt how to behave appropriately around other children most of the time.

Today Tilly had her first ever play date with the other girl in her class. They went to Nursery together too and Tilly targeted her as she loves her and her hair is especially long and lovely to pull 😫. But not anymore. Both girls were happy to see eachother. They sat together with her younger sister in a restaurant and nothing was broken, no one was injured and the place didn’t burn to the ground.

My child finally has friends aged 5 and a bit.

And I have a friend who gets it. ❤️

How to raise a child with special needs as a single parent and juggle everything else.

So it’s no secret I have a lot going on. I’m a single parent, I have two small children and one happens to be disabled. On top of this I’m a student Midwife, a peer supporter and all round busy bee. It’s a juggling act but I manage. I was asked how I do it all…

This isn’t an easy question to answer. I’m not sure I can really do it justice as I don’t entirely know. But here goes:

  • Always say yes. If someone offers you help, say yes. Don’t be a martyr.
  • Prioritise and don’t waste energy. You don’t have to do it all. Find ways to make your life easier. Get a dishwasher, hire a cleaner, get your Mum to do your ironing 😜.
  • Accept how you’re feeling is okay. It’s okay to think it’s really unfair. It’s okay to feel really sad, admitting that to yourself and accepting that it’s okay to feel the way you do is half the battle.
  • Learn to fight. You won’t get anywhere until you learn when to stand up and fight for what your child needs. Never let them fob you off and never back down.
  • Have PJ days. You don’t have to be out and about all of the time. It’s okay to stay home and chill out. Kids need down time too so don’t feel guilty if you’re all still in your pjs way past lunch.
  • Don’t do it on your own. Find your tribe. Tilly has a team of around 50 people who support me to raise her. Family, friends, teachers, support staff, nurses and paediatricians.
  • Celebrate every little thing. We have a roast or sit and watch a film cuddled up eating snacks every time something positive happens. Life is for celebrating after all.
  • On a similar note always plan something to look forward to. Even if it’s a quick coffee with your friend, life is more bearable if you know something fun is on the horizon.
  • Self care self care self care. Treat yourself. Do a face mask, have a bath, get your brows done, buy the shoes, go and walk the dog. Do what makes you happy.
  • Try not to stress. Stress helps no one and it makes you ill. Write a list of what you need to do, tick it off and then go and have a lie down. It’s okay to delay filling in that form or making phone call that makes you want to cry for a few days.

But most of all, talk about it. Talk about how you’re feeling, talk to others in similar positions, talk and laugh with your friends. Always talk.

I Drug My Child to Sleep – Confessions of a Tired Mum

I’ve been so tired that I’ve slept fully clothed many times. I’ve been so tired that I haven’t bothered to make myself dinner and just curled up instead. I’ve even been so tired I’ve almost gone to bed without taking my three year old up to bed too.

This is life with a child who does not sleep. I rely very heavily on caffeine.

A few months ago, I sat in front of Tilly’s neurologist and told him that my child was broken, she could not and would not sleep. She was surviving on a few hours of broken sleep a night. I was only half surviving by letting her sit and watch Mr Tumble half the night.

So he offered me melatonin. Melatonin is a hormone made in the pineal gland in the brain. Tilly does not make enough of this hormone so now I give her synthesised melatonin made in a laboratory. It puts her to sleep but doesn’t keep her asleep.

It’s been the best thing I could’ve done. Raising a disabled child and her brother whilst juggling university and work is hard enough as it is… at least now she can have a few more hours sleep and I can catch a few hours too before she starts waking again around 3am and I have to get into her bed.

Thirteen Ways Goverment Budget Cuts Have Failed my Family (A Shortened Version)

It’s been in the news lately that my local  county council are facing massive budget cuts and are failing SEN children. Was I shocked? Course not. Here’s a little list of some of the ways that budget cuts and “belt tightening” have personally affected my family so far in the last five years. 

1) When I was in labour with Tilly, the unit was understaffed and so the midwife failed to spot that I was haemorrhaging heavily until my mum pointed out I was turning grey. I almost died in that labour room. 
2) When Tilly was a few months old, my GP at the time told me she was “failing to thrive” but couldn’t refer me to anyone bar the growth paediatrician as the referrals would be rejected. 
3) when Tilly was 10 months old my wonderful Health Visitor did her one year check early and sent off referrals to physio, development and speech therapy. All were rejected. Not enough funds.
4) When Tilly was 18 months old, those referrals that were resent countless times by my wonderful Health visitor were finally accepted. She couldn’t walk, feed herself or make many sounds by this point. 
5) Those referrals didn’t turn out to be very helpful, the physio wasn’t enough, the speech therapy was pretty much nothing, only portage and her new developmental paediatrician seemed to be able to help. My parents fortunately paid for private physio and occupational therapy to finally get her on her feet.

6) When Tilly was struck down by a virus aged 2, she could no longer sit, crawl or walk. Budget cuts meant that rehabilitation physio was a piece of paper. 
7) When she was hospitalised for a week suffering endless seizures, again she couldn’t walk. This time a charity stepped in and got her walking again. 
8) It took eighteen long months to get Tilly the wheelchair she needed and when it came, it wasn’t really suitable. There was no raincover, it was impossible to push and very very heavy. Budget cuts meant I had to like it or lump it. 
9) The local children’s centres were closed. We no longer had a safe haven to go. Isolation crept in. 
10) Tilly was discharged from occupational health that she desperately needed because her therapist went on maternity and budget cuts meant she wasn’t replaced. Again, we had to go private. You don’t want to know how expensive that is. 
11) The disability team at social services have turned us down multiple times for support and respite “any single mother would struggle with two young children” loosely translates to “we don’t have any money so until you put them at risk, soz”
12) Last year my child tax credits were stopped for months with no warning thanks to a spiteful company called Concentrix going after every single parent they could find. It was a very difficult few months and I am lucky enough to have my parents to help me feed the children. Others were being turned away from food banks and suicidal, feeling they had let their children down by being unable to feed them. 
13) Every appointment, every referral, every service, every phone call is painful. You know that you’ll be waiting 6 months for a ten minute appointment, they are so understaffed. You know you’ll be told no over and over and over again.
So. Austerity Britain, how much worse does this have to get before something gives?



Lady Gaga – The Cure 

I’m asked frequently who exactly I’m finding answers about Tilly for. The answer to that is pretty complicated and I don’t always know. Tilly doesn’t know she’s different after all. It is notoriously difficult to get the support and services for an undiagnosed child. You ream off lists of symptoms and pray you’ll say the right one to tick the box for what you need. It took close to two years to get Tilly the basic level of physio, speech therapy and occupational she is entitled to. “I don’t know” is not the right answer when you’re asked what is wrong with your child. 

So firstly but possibly not primarily, I look for the answer to benefit Tilly. I want her to have the right input and level and care that she needs for the rest of her life. I will never let them do anything invasive or unnecessary. She is a person first and foremost, not a research subject. 

Secondly, I want to know for my own needs. I need to know for my own sanity. I need to know if it was my genes and my body that failed her. You’d think it didn’t matter, it’s not as if I can control what my genes do. But it does matter. 


I am only 27 but I cannot and will not have more children because I don’t know if I will have another disabled child and I don’t know how severely this will affect my child over the course of time. We still don’t know if Tilly’s condition is degenerative or not. With an answer, I can undergo genetic counselling or prepare myself if I ever do want to have another child. I am too young to accept that I will not have more children. But I can’t without an answer. 
Thirdly, I am a sister and a mother to another child. I search for an answer for my brother and my son. I want them and their future partners to be able to have children without worrying that they too could have a disabled child. Tilly is wonderful but I would not wish her difficulties on another child, epilepsy is a cruel condition and being unable to speak is very difficult. I owe it to my brother and my son to find all the answers that I can. Tilly’s DNA is with great ormond street now to determine if her epilepsy is genetic. I want them to be able to educate themselves and access all the support available to them when they are ready to have children. 


Lastly I do it for families just like mine. The more DNA being tested, the more answers will come. Families like mine will not have live in limbo forever. 
That said. I think a lot about what I’ll do if an answer never comes and that’s where Lady Gaga comes in: 
“If I can’t find the cure, 

I’ll fix you with my love”
I will continue to campaign and fight and advocate for my child and others like her to have everything they need. I will be her voice. I will make sure she has the very best and reaches her full potential. I will do this until the day I die. I’ll no doubt use my last breath to mutter something about equal rights 😅
I’ll do all of that because I love her unconditionally. And that counts for more than anything else. 

Back Off Our Hospital 

I wasn’t shocked at all today to read that the hospital, Queen Alexandra in Portsmouth, where my children were born and where Tilly has been cared for many times over the last five years was slammed by the Care Quality Commission in their latest report. 
I wasn’t shocked at all… No.  I was furious. After all, this is the hospital that saved my life when I almost died during childbirth. This is the hospital that safely brought Arlo into the world. The place where Tilly was blue lighted at 3am after an hour long seizure. Where we’ve stayed many many nights. Where we go for a billion appointments a year. 


I was furious because I remember the midwife who promised me I’d be okay as I was wheeled to theatre after haemorrhaging and the obstetrician who saved me that day. I remember the paramedics who made it bearable to sit in an ambulance whilst being blue lighted at 3am thirty minutes away (they closed my local hospital) willing my child to stay conscious, the nurses who held my hand as I hopelessly watched my child locked into yet another seizure night after night. The same nurses who always find us a side room because Tilly can’t cope on a busy ward. Who make me toast after a long night and do whatever they can to make such a horrible experience that tiny bit more bearable. Not forgetting the doctors and support staff. 


I was furious because I watch the staff at our hospital working themselves into the ground, under staffed and over stretched but always giving us their best. I’ve never felt like anything was too much. They’ve always had time to reassure and double check. I watch them and I get so angry that they’re slated when they try so hard to make things better for us. 


So this is my little shout out to the wonderful staff at QA. Thank you for all that you do. Thank you for taking such wonderful care of my family and thank you for keeping on even in these difficult times. You make a huge difference to families like mine and you are so very appreciated. Thank you. A million times over. 

And a giant middle finger (just for good measure) to our government who have created such impossible working conditions for the amazing NHS staff. 

Separation Anxiety – How Exciting!

Weird thing to say hey ? Tilly is going through a separation anxiety phase and if I’m honest, I’m absolutely bloody thrilled about it. At four years and nine months old, my biggest baby has started howling if I leave her at bedtime and it’s a little bit brilliant… 


If you follow me on Facebook or instagram you’ll know we had a reallly magical moment last week when Tilly let me sleep next to her for the first time in four years. It was so wonderful that I cried. 
See, since about twelve months old, Tilly hasn’t given much of a shit about me. The baby that was strapped to my chest all day and slept in my arms all night all of a sudden didn’t want me anywhere near her. Ive had to practicality throw her and run away at bedtimes as she hated me being in the room with her. Every mothering instinct in my body wanted to sleep next to my baby and soothe her to sleep, but she didn’t want me anymore. This continued for the next four years. I cannot tell you how difficult it has been to settle her to sleep in hospital, I’ve had to hide in bathrooms and pray she’d go off many many times. Not being able to settle or soothe my child to sleep in unfamiliar and strange places was hard. Really hard. 

And yet here I am. Sat on the end of my almost five year olds bed watching her drift off to sleep. It’s taken me two weeks to realise it’s me she wants, quite possibly the last thing I’d ever think of. I darent leave the room as she will scream the house down if I do…. and you know what? It’s bloody magical. I’ve seen her fall asleep a handful of times in the last four years and all of those occasions were due to masses of epilepsy drugs, one general anaesthetic (hell) and one exhausting early morning curled up together in the resus room of the child’s Ward after a night of seizures. Never very happy times. 
This is different. This time she wants me here. She finally finds comfort from my presence and wants me to be in her space even if I do keep spoiling it by sobbing (happy tears) loudly. 
This summer with Tilly has been wonderful. After a springtime of non stop hospital stays, violence, EEGs, steroids and desperate phone calls to doctors who couldn’t help me… it’s simply magical to finally be what my child needs. I finally feel like she knows I’m her mama again. 




Dear Health Care Professionals

I wrote this little letter a year ago and just found it again over on SWAN UK so thought I’d reshare:
Dear Health care professionals,
We have a few appointments coming up next month so I thought I’d write you an open letter.

Firstly, thank you. Thank you for saving my life when Tilly was born. Thank you for looking after my baby and working your hardest to give her the very best care. I know it’s not your fault that tight budgets mean I have had to fight every single step of the way. Thank you for doing your best despite working in such difficult times. I owe you a debt I will never be able to repay.

But please remember that when you are talking about your patient, commenting that she is fascinating, calling her a mysterious enigma and throwing out possible, soul destroying conditions you think she might have … she is my child. Not her symptoms and not the misfiring electrical impulses in her brain. She is Tilly. She is my child. She is the daughter I dreamt about my whole life, she is half of my heart and there aren’t any lengths I will not go to for her.


When you diagnose things or point out what is “wrong” you are talking about my child. Casually dropping potential conditions into conversation or talking about epilepsy so matter of factly … it hurts. Yes, she has epilepsy, yes she may have an excitingly mysterious syndrome … but you cannot begin to imagine how hard those things are to hear about or deal with as a parent. Not just in the present, but also all the ifs and buts of the future and all of the how and whys of the past.

Please, health care professionals, please remember that your patient is my child. My Tilly.


More than that. She is a person, her own person. With her own wants and needs. She loves Mr Tumble, listening to you sing and clap and sleeps stroking the ears of Ewan the sheep. She loves hands, sit and rub her hands and she will love you forever. She likes baths and swimming in the sea and being swung as high as possible on the swings at the park. She has the most infectious laugh in the world and wiggles her little bum and flaps her arms when she walks. She eats. BOY does she eat, it’s impressive how much such a small child can eat. She is a person. Not your 2pm appointment, not a statistic or a NHS number or a box to tick. A person, a beautiful, glorious, life changing wonderful person. She is Tilly, not just your patient.