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BBC World Service Interview with
Shelly & Rob
The Channel 5 "Extraordinary People" All Episodes

bbc-noah noahandsteph

 This is "Noah's Story"


Noah was born in March 2012 He was diagnosed with Spina Bifida from early on in the pregnancy and as time progressed there became more complications, it became apparent that Noah was missing a back quarter of his brain, would be paralysed from the chest down, the Spina Bifida was thought to be so large that they would not be able to close the gap. There was also a chance he would have Down syndrome as we never had the test due to there being a chance of miscarriage.

As well as the above Noah also has a chance of having Edwards Syndrome “Edwards syndrome is a chromosomal abnormality characterized by the presence of an extra copy of genetic material on the 18th chromosome, either in whole or in part. The additional chromosome usually occurs before conception. The effects of the extra copy vary greatly, depending on the


extent of the extra copy, genetic history, and chance. Edwards syndrome occurs in all human populations”

Trisomy 13 “Trisomy 13 occurs when each cell in the body has three copies of chromosome 13 instead of the usual two copies. Researchers are not yet certain how this extra genetic material leads to the features of the disorder, which include severely abnormal cerebral functions, a small cranium, retardation, non-functional eyes and heart defects. Trisomy 13 is fatal”

These are just a few problems that we were faced with before he was born.  To make matters worse a ‘do not resuscitate order’ was placed on Noah and we had to go through the heart-breaking motions of organising a funeral for our unborn child.

Noah was delivered by caesarean section at 6:17pm on  6th March 2012 weighing 9lb 7oz, breathing on his own.  Shortly after being born Noah had to undergo a double operation, the closing up of the whole in his back and a shunt placed in the back of his head to help drain the fluid from his brain as the pressure with the fluid on the brain that he did have could also kill him.  The operation was a success and the whole in Noah’s back was closed.

Noah went for an MRI scan which then revealed some shocking results.  Noah had a lot less brain than we thought and was actually born with just 2%  of the brain that he should have which is a small thin layer at the front of his head. This happened due to a porencephalic cyst destroying his brain.Noahs-back-after-closing

His eyes were like that of a baby born blind in the way he tried to focus to see things, this was due to the immense pressure put on his eyes, with the build-up of fluid in his head. It is actually a miracle he can see because as far as we’re concerned there is nothing visibly connecting his brain to his eyes which means there will be more tests done this year (2013)

The operation Noah had to install his shunt was not as successful. We had 5 emergency trips to the hospital, and he had developed an infection in his brain fluid called ‘enterococcus faecalis’ also, Anti biotics hadn’t worked due to Noah’s ventricles being blocked and Surgeons decided a brain wash out was needed. Noah’s shunt was removed and 2 ½ litres of replacement cfs fluid was put in his head  and a high dosage of antibiotics were given as well as daily manual draining (tapping) where up to 40 ml was taken from his fontanel every day, this had to be done as there was no drainage system in his head due to the shunt being removed, this resulted in Noah having the worst possible headache imaginable and Morphine had to be administered.

This amazing little baby has defied the doctor’s in so many ways; whenever something knocks him back he finds the ability to get through it.

After 7 weeks and Noah’s first Easter in hospital a replacement shunt was put into Noah’s head and a soft tube from the drain down his neck and into his abdomen was put in this is permanent and will always run the risk of blocking, if it does it would have to be removed again and again every time it happens. This time it was a success and healed very nicely we left the hospital on the 12th May 2012, since last may we have been to the Spina bifida clinic for kidney & bladder scans, also having a dye being put into his bladder to see if Noah needed to be catheterised the test came back positive and Noah Noah-in-hospitaldid’nt need a catheter, Noah’s eyesight has also been checked and even though there’s nothing behind looking at the MRI scan pictures there must be something as Noah has full eye sight but test are due shortly to see how much eyesight Noah actually has. Child development assessments are also done every 6 months along with hearing to be checked every so often, we have this year already been to see a bone specialist and Noah has had xrays to determine bone abnormalities which we are pleased to say Noah, doesn’t have, we have appointments every month to keep a check on his bones.

His feet turn out abit like having club foot, it takes a lot of work as 5/7 massages are done each day along with Physio, and also swimming and hydrothrerapy several times a week. Noah can’t turn himself during the night so he has to be manually turned Next on the list of treatment for noah to have is an Electroretinogram (ERG) & visual evoked potential (VEP), Noah’s eyes have to anaesthetised & a small gold electrode placed on his lower lids, Then the VEP test is to establish how well his eyes and associated nerves to the brain are functioning, whilst there Noah has another appointment for the paediatrics neurology (child development) Noah has recently been diagnosed with lymphedema and has regular quarterly treatments This amazing little son of ours has defied the doctor’s in so many ways whenever something knocks him back he finds the ability to get through it, we are so very luck to have Noah hes inspired us so much in spreading the word about folic acid & B12 even though I took it I didn’t take it early enough no one told me just how important folic acid was.

Im sure noahs story will make people think about taking it as it should be taken which is 3 months before, please click this link and it will take you to noah-big-smilethe folic acid site http://www.gofolic.org.uk/  Im now campaigning along with the spina bifida charity & folic acid team to get this information down to education we have just been told noahs story will go national and off to Parliament, I hope in my heart something is done spina bifida cases have dropped due to mummy’s having termination, what people don’t realise is that spina bifida can just effect one disc and you can lead a normal life and never know you have it ! I want to change a lot of things, I wasn’t given an information pack when miscarried I had no one to talk to other than people close to me, I miscarried in a room which my baby was called a ‘product’ I wasn’t told about being able to have a funeral from 12weeks gestation, and I could hear other babies being born, things need to change & information needs to get down to girls from the age of 16 planning pregnancy’s I found out at 40 just 24years to late !!


Please share my sons website and pass on this vital information on.

x Love Shellybobbins® xxx



0 #43 Panna 2018-01-19 21:32
Hello Noah, I have watched your story on TLC in the United States, and was touched by your sweet smile & your kind heart. I cried with you when your mommy put those things around your little legs, but I cried even more when you stopped crying and asked your mommy if she was alright. You've shown how selfless you are. I have been praying for you, that you'll show the world that miracle still exist, that you'll walk and run one day soon. You are my inspiration. Whenever I have a bad day, all I have to do is to look at your smile and all my sadness disappears. May God bless you and your family, and may God continue to work His miracle on you. Biggest hug to you, dear boy.
+1 #42 Sandra 2018-01-15 11:01
Dear Noah,
you are showing the world that incredible things can become reality!
That shows that nothing is unreachable!! :)(:
All the best for your future!!!
You are a great boy! Sandra from Germany
+1 #41 Jenny 2018-01-14 23:17
Hello Noah, hello Noah's family.
I wish you all the luck of the world from the heart. you are a fighter. It's good that there's you. Greets from Germany :)
0 #40 ines 2018-01-14 21:55
Hi noah. Habe mich sehr gefreut von dir und deiner Familie zu hören ihr seit super viel Spass in der Schule ines
+1 #39 Thomas 2018-01-14 21:25
Hey kleiner Noah, ich drücke dir ganz feste die Daumen dass deine Entwicklung so gut weiter geht und du hoffentlich auch irgendwann laufen kannst! Du bist ein tapferer kleiner Kämpfer, mach weiter so! ;-)
0 #38 Werner Hoppe 2018-01-14 20:20
May God bless you and add all that you need for a good and happy life. - Werner Hoppe from D 31737 Rinteln, Germany where mor than 50.000 British Babies were born in the former BMH since 1945...
+2 #37 Samantha Llewellyn 2017-09-28 13:30
I feel honoured to have watched the Channel 5 documentary about your beautiful Noah. Thank you so much for sharing your story. I think Noah is incredible, his sister is incredible and you two as parents are also incredible! As a parent myself, I know I would do everything possible for my children just like you have. I smiled, I cheered him on, I cried. Never felt so many emotions in one sitting. He is truly wonderful and you are so very lucky to have a fantastic, supportive daughter too! I want her to know how inspiring I find her. Of course, it is Noah's story but I can't forget how brilliant she is too. Congratulations on your perfect family. I wish you all every bit of happiness for the future and I hope beyond all hope that Noah continues to develop and grow his brain further. Well done to all of you and thank you again for sharing your story. God bless you Noah xx
+1 #36 Dawn 2017-09-27 22:22
My husband and I have just watched your story Noah, what an incredible family you all are, we send you our love ,hugs and best wishes x
+2 #35 Geoff Yates 2017-05-19 19:04
Hi Noah.
Just to let you know that I am so happy to have met you and your family today at Sandringham. You are a cracking young man and I love the fact that you are a keen gardener because as you know I keen gardener myself.Any way you keep up the good work and be sure to look after mum and dad.
Love to you all Geoff.
+2 #34 Mikaela 2017-05-08 01:36
Noah is an inspirational little boy with so much promise and potential .. due I'm sure largely to the fact his parents are so amazingly dedicated to his development and education. I live in Brisbane, Australia, and watched Noah's story on 60 Minutes last night .. I have 2 children, a 4 year old girl and a 5 month old baby boy. My mum and I were touched by Noah and his incredible family and their story, and we would love to send Noah a little Aussie parcel to let him know he is being thought of fondly down under and so he can enjoy a few Aussie gifts.. is there anyway I can be emailed with Noah's postal address please? Many thanks and much love, Mikaela Read xo

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