In just over 2 weeks time on the 28th April I will be taking on the London marathon! This year I have a big goal to go a big way in raising money for a minibus for Happy Hill.

Happy Hill is a new club that was started by a mummy that has two special needs children of her own and so she has seen the need for families to get a break so they have time for themselves or to be with there other children to give them valuable time without the special child around which is so hard to give when the special needs child is around. So this lovely lady and her team are willing to give up there time to take our kids out and take them on trips and give them some of the amazing opportunities that there are out there .

So the main reason for this fundraising is that Happy Hill are trying to fundraise for a 17 seater minibus with a wheel chair lift, which will cost £30,000 to buy to take the kids out on trips Happy Hill is based near Braintree our local town in Essex. This would give the children some of these amazing opportunities that there are out there with one on one help, hat we as parents can struggle to give.

I decided to set myself the challenge to get an automatic place into the London marathon by getting a good for age time as it is so hard to get in through the ballet. So as well as feeling “good for age” I could also choose any charity I wanted so I have chosen this small charity.

It took me 3 years to motivate myself and two years to do it and get the place!

I ran 2 Brighton marathons missing my time the first time by 51 seconds. I needed to get 3hrs 50mins (3hrs 50mins and 51 seconds) did not qualify me. I declared it was worse than childbirth!! It was an incredibly hot day and a temperature you would not want to run a marathon in!

I felt I had to have another go, last year was more successful I made it 3 hrs 35 mins

So this year I start the marathon “good for age “and have chosen to run for Happy Hill. Happy hill was founded in July 2018 and it provides a fun place for special needs kids to come and play on a Saturday and in the holidays. It provides a safe environment that allows the kids to make their own friends and play in whatever way they choose.

A bit about Noah

This is very close to our hearts as Noah, our 10 year old son, attends as he is special needs and this is a little bit about him

I had a totally normal pregnancy and decided to have Noah at home. Max our eldest was born in hospital with no complications and so we were offered to have Theo our second son at home. It was a lovely experience so we felt no reason not to have Noah at home. Noah was born very quickly in fact a bit too quickly as we hadn’t yet called the midwife. But Noah arrived seemlessly and Luke doing a great job of delivering him successfully onto the all new White Company towels!

When the midwife arrived Noah passed all the tests that newborns have. At 12 weeks we decided to take Noah to see a paediatrician as we knew things were different than the other boys. Noah seemed very quiet and sleepy we still had not heard him cry yet!

The paediatrician took a good look at him and declared he was just laid back like his father!

We still continued to think he was different from his brothers when at the age of 1 had only just learn to sit up and hold his head up! The doctors then begun to take more interest as noah was not meeting any of his milestones .

After a lot of tests, blood tests, mri scans, chromosome testing ect ect ect and many months, Noah was diagnosed as “UNIQUE “ he had a completely unique syndrome (a significant deletion of chromosome 15q12.3 and he was the only recorded child in the world with this number!

You need chromosome 15 for certain brain developed and Noah was missing a large amount. We now knew that life was going to be very different for Noah and our family.

Noah is significantly delayed both mentally and physically at 10 he is more like an 18 month old. At 3 he began to suffer his first seizures and was diagnosed with epilepsy. He then spent many months on and off in hospital while they desperately tried to get his seizures that lasted a very long time under control we often thought we were going to lose him. The doctors said they didn’t know whether he would walk or talk and didn’t know what kind of life expectancy he would have. He was the only one so there was no one to compare him to!

He has ataxia and shakes a lot so is still unable to feed himself (with cutlery!!) He was also diagnosed with asthma, eczema and hay fever and was taken off dairy products, although these are very much slipping back in! His favourites being chocolate, mayonnaise, cheese and butter! He hasn’t yet passed a hearing or sight tests but we know he can hear and see and promptly takes the glasses off and throws them across the room!!

Noah is now 10 he does walk in a very toddler like way and is very unbalanced so wears a special helmet to school. (He attends a special school 5 days a week 9.15 -3 pm where he has one on one care) as he gets knocked over a lot as his balance is so bad especially when he tries to run!

He talks in his own Noah way, we are unsure how much he understands but he is developing and beginning to try to form words together and quite often comes out with a sentence.

His seizures are at the moment totally under control, in January they stopped his medication to see how he copes and only has to take medication for his dribble which he does a lot .

It is now April and no seizures yet!!!

He is a total joy but incredible hard work he needs 24 care as he has only a small sense of danger and is in his own little world. Sleeping is not high on his agenda and he takes melatonin to help him sleep which gives you 4 hrs!

He brings so much joy and happiness to our family he totally loves his brothers very much and they are great with him. He loves our dog Gus ( in fact any animals) he totally loves being with his family. He also loves looking at books listening to music, water ( swimming , the sea, bath etc) anything electrical he knows everything about cbeebies and can totally work his way around an iPad and or phone! And can even get Alexa to turn on!!

Theo after reading the book Wonder said “would we change Noah “ after a lot of thought no I said but I would change the hardness .

Training and running the marathon is something that has been incredibly hard work but looking after a disabled special needs child is definitely the hardest most tiring thing I have ever done, in fact, it doesn’t get easier it gets harder! But it is also the most rewarding everything he does is so exciting as you never know whether he will be able to do these things. As I said he is like an 18 month old he will never be normal probably would never have a job or live on his own but our prayer for him is he lives a long and happy and simple life. He is such a loving little boy and a totally joy .

The clubs Noah goes to are total respite care otherwise we only get 4 hrs help a week. So on some Saturday mornings or afternoons and in the holidays he sometimes goes to a club for a few hours a day. Noah struggles in room with lots of people and lots of different noises but he gets one on one care and they really like to try to get him out .

So I would love you to help me to raise as much money as I can to try to help pay for this minibus.

Thank You so much for reading our story and hearing about our lovely boy and if you you had the desire to give we would be hugely grateful. If you go to my just giving page at or you can write a cheque out to happy hill and send it to me at Gepp’s house, Felsted School, Felsted, Essex CM6 3JH, thank you so so much and looking forward to raising lots and lots of money and to running a marathon on the 28th April.

Hannah, Luke, Max, Theo and Noah McIlvenna