Due to unforeseen circumstances, Juliette has been forced to pull out of this year’s London Marathon. Thank you for your support.
Mum of three, Juliette Edwards from Birmingham, has a very personal reason for running in this year’s London Marathon for Cerebra.
Juliette, a doctor, has three boys – Benjamin, Daniel and Joseph who are all on the Autistic Spectrum and she has reached out for support from Cerebra on several occasions.
Juliette told us her story in her own words, including why she wanted to give something back to Cerebra.
“My three boys all have learning difficulties and Cerebra has helped me a great deal over the years. At times I don’t think I would have managed without Cerebra’s support.
Our family journey started when Daniel was born prematurely at 35 weeks. He rapidly lost weight becoming just 4 1/2lbs. I hadn’t for one moment contemplated that anything untoward would happen in my pregnancy. The day before he was born I had a little bleeding but still went to work, as I had a check up appointment later that day with the midwife, so thought I’d just discuss it with her then. My consultant and I had a paediatric theatre list that morning, and our conversation whilst at work included her asking me how it was all going with the pregnancy. I casually remarked that I was sure there was nothing to be concerned about, but that I’d had some bleeding. She felt differently and sent me straight off to the maternity unit. Needless to say I didn’t go back to work, and was declared to be in labour that evening with Dan being born the next day. I had a humongous cannula in my hand, just in case I were to suddenly crash. I found the whole experience surreal, with all the monitors attached and staff busying about, as I’d never had anything ‘wrong’ with me before.
Dan Jo and Benji
It carried on from there. Daniel was rushed down to the special care baby unit on day four as he couldn’t feed until the twenty sixth attempt. As a result he was tube fed for fourteen days. We went home at day eighteen with a tiny fragile baby. We were back in the hospital when Dan was six weeks of age for surgery as he suddenly developed bilateral inguinal hernia. He was four hours in recovery as his temperature had dropped to 32 degrees on the operating table! He was delayed with all his milestones – smiling, rolling, laughing, sitting but I hoped for the best and thought he’ll catch up, it’s just because he was early.
The health visitor was so concerned that at eight months we were referred, and so began a whole series of assessments and investigations, and three weekly visits to the child development centre for a whole term for OT and SALT review, culminating in a big multidisciplinary meeting, at which dyspraxia was diagnosed. It was said he likely had ADD and ASD too, but he was too young for these to be formally diagnosed as yet. I was told he would definitely need special schooling, and that the consultant was going to get the ball rolling for this, even though he was only 2, as such things took time to arrange. We carried on through toddlerhood with OT and physio interventions, as well as all the usual activities, I had gone back to ophthalmology when Dan was one, and started maternity leave again when Dan was 2 and a half, as Jo was born. How wonderful when he could just feed minutes after being born, and he appeared to be developing at a normal rate. How surprised I was when the health visitor expressed concerns when Jo was two and said he needed to be referred for consideration of ASD. Dan started school, and after a huge amount of toing and froing with the LEA, no statement was forthcoming for Dan, and he started at a mainstream school with 90 peers in his year, 30 in each class. Educationally, everything was a phenomenal struggle for him.
I was pregnant with Benji, and he threatened to be born at 32 weeks but he managed to hold on in there until 37 weeks. Benji’s development was delayed also from the outset, and he also had a fistula requiring surgery when just a few months old and also abdominal surgery for duodenal malrotation before the age of two. Alongside all the therapy input, and SEN meetings at school I was often going to appointments every day of the week.
I could write a book about all the things that happened, interventions I tried, support I gave. Then the tribunal battle to get Dan his statement and a place in special school, that would be a whole volume in itself. Benji’s school weren’t coping with him, nor he progressing in class, so the LEA put him forward for a statement at the same time, and with the LEA’s support in getting his school place, the process was so much easier, but still required a phenomenal amount of input none the less.”
Cerebra has been able to help Juliette’s family with advice and support, help through our Wills and Trusts scheme and a much needed family break at our holiday home.
This year the London Marathon takes place on 24th April. It’s one of the biggest running events in the calendar and Cerebra was very lucky to get a place in this year’s race. Lots of people applied to us for the place and competition was tough – we were delighted to offer it to Juliette and wish her the best of luck.
If you’d like to support Juliette you can visit her JustGiving page here.
Cerebra has places in all sorts of running events across the country – from half and full marathons to mud runs and colour runs. So if you fancy challenging yourself and supporting Cerebra at the same time you can find out more here.