Diary

4 Jan 2012 - Funny Blood does Downing Street!

As some of you will know, Contact A Family kindly asked us to join the Prime Minister at 10 Downing Street for his 'Children of Courage' Christmas Party! We were honoured to attend and had a truly AMAZING day! HUGE thanks go to Amy and Paramita of Contact A Family for the opportunity – it was fabulous!! There were so many highlights of the day, most notable was when we found ourselves drinking mulled wine with Dick and Dom, Mister Maker and Mr Tumble as David Cameron asked if we were having a good time?!! However, when I asked Maya and Noah what their favourite part of the day was, they said it was when I got stuck in the barriers going into the tube at Paddington! Great!

Please keep an eye out for the latest edition of Woman's Own where there will be a feature on the party! Here are some of the official pics from the day:

28 November 2011 – FB climbs Snowdon!

10 March 2011 - FB and the Castlemorton Primary School Car, Tractor and Bike Show!

FB was honoured as the fundraising charity of choice when it came down to the raffle at our local primary school! The members of Green Class undertook a project on Inventors and held a car, tractor and bike show in the playground. It was an amazing morning with a great deal of effort from the children, staff and parents alike. Article in the malvern gazette here!

26 January 2011- Fun Cup promotes Funny Blood

Track Torque Racing Limited - the race team based in North Yorkshire who sponsor FB - begin their annual Fun Cup Challenge in April. The Fun Cup is Europe's Leading Endurance Race Series.The UK championship is hugely successful, with eight UK rounds in 2011 and over 200 registered drivers, plus grids which top a huge 30 cars for each race. Each year they receive widespread promotion, with each round featured on Sky Sports "Racemax" programme and Motors TV, along with an average of five repeats of each programme. Fantastically, Fun Cup will also be promoting Funny Blood with two stickers on all of their race cars this season - which means we'll also have TV coverage! HUGE thanks to Roxie and the Fun Cup team!

11 January 2011- Noah's Results

15 December 2010 - Working with the Haemophilia Society

26 November 2010 – Drug Trials and continuing tests

11 November 2010 – Ruby talks to the children

I recently went into nursery where Noah spends some of his time and talked to Noah's class about his condition and why he wears a helmet ... this went really well and all the staff and children were very supportive. Noah was fantastic! We made a slideshow video about the day, see below!

Funny Blood Nursery Visit from Eli Yerbury on Vimeo.

20 October 2010 - Contact a Family

We finally met up with Amy at Contact a Family to present the cheque for monies raised at the BBQ . Amy has been a huge help in providing me with useful information and help over the last year or so! I very much hope to organise another event next year – so, keep watching this space!!

19 October 2010 - Funny Blood on Facebook

What happens when FB meets FB? That's right -Funny Blood is on facebook! It would be great to have you as a friend. Click on the badge below to check it out.

Thanks so much for everyone who supported the FB campaign – in donating prizes and turning up on the day! It really was a great day... the weather was brilliant, the people fun and the atmosphere very cool! We had lots of fun and raised just over £500 for Contact a Family (a total of £514.26 after costs!)

Special thanks to Jane Clive and family at Clives Fruit Farm for hosting, Hillworth Farm Meats as well as the blues band who played on the day, Trevor for being such a face-painting dude and, of course, Cathy and Simon on the BBQ!

Lots of people have asked ‘what next?!’... well, I don’t know yet but watch this space!!

In the meantime here's a little video from the day...

Funny Blood BBQ from Eli Yerbury on Vimeo.

11 June 2010 - Blood and goats!!

Since Funny Blood was set up I have received a great deal of support from various places... as you might expect, my family and friends have been very encouraging, but so have a number of more random companies!! Please check out the link on the St Helen's Farm website!!

10 June 2010 - Alternative therapists

Straight after Noah was born, he was used to having assessments - he was born with talipes (a condition where the foot is not formed correctly - in his case, this was from being so squished up inside me). Since he was diagnosed with Platelet Function Disorder, he has had many, many tests... and it struck me that I have worked with various medical professionals as well as a number of fabulous alternative therapists. To name a few, we have worked with:

Osteopath - the lovely Joanne helped Noah's head to go back to it's original shape after he was born via ventouse as well as working on his talipes. She is also a fountain of knowledge regarding other issues and was the first person to suggest Noah was lactose intolerant ...

Physiotherapist - the amazing Caroline was sent to us to help get Noah's feet moving and manipulate his bones and muscles to grow in order to correct his talipes. Luckily, the talipes was very mild and is expected to be corrected in due course!!

Homeopath - Melvyn has worked with Noah to try to help relieve his clogged up chest - as he has asthma - often meaning a cold will turn into a chest infection very easily. Noah has had countless courses of steroids and anti-biotics over his two and a half years of life, so we are trying to help relieve this and get Noah healthy!

Specialist Exercise Instructor - since knowing that Noah has a blood disorder Bob has worked with Caroline and myself, helping to create a special exercise programme designed for his age and to strengthen his core abilities in order to help him be healthy in the future. We realised there were not many programmes designed for children with blood disorders - the only paper we found is attached. We also discussed how it is important to encourage his interest in those sports which are more suited to him, in consideration of his funny blood i.e. swimming rather than rugby!

Occupational Therapist - I asked for Christine to come and assess our home (local government arranges to assess his nursery placement) to make sure I was making all the correct adjustments needed to ensure Noah's safety. We have since added numerous stair gates, hand rails and - very importantly - asked for funding for the safety matting in the garden and patio areas!

Nutritionalist - it has been a joy to meet with May, a local nutritionalist, to find out what foods Noah is actually intolerant to. The answer is - A LOT! So we are working with her to help keep Noah healthy and give him the best start in life - hoping he'll be in good health for a long time to come!!

3 June 2010 - Roald Dahl rocks!

Contact a Family have been fantastic in helping me find out what Noah's entitled to... and what other sources of help are available for us. Our brilliant Family Worker, Amy Turner, completed a grant form for the Roald Dahl Foundation, which has enabled us to secure a grant to buy some hard-wearing outdoor safety matting to go over the patio area in our garden. Thanks a million!!

30 April 2010 - Funnyblood Pirate ship sets sail!

It was a really fabulous day when the climbing frame - funded mainly by the Family Fund grant - was completed and installed!! HUGE thanks to everyone who made this happen... you know who you are!! We all look forward to many more days, weeks, months and years of fun!

25 April 2010 - New drug trial offers hope

On Friday, Maya, Noah and I went to to Birmingham Children's Hospital. Noah was attending an outpatient's appointment at the Haematology / Oncology Clinic... and it's always eye-opening to see all the children and their parents awaiting tests, surgery, results etc. Still, when sitting next to a child who blatently has cancer, it's a rather sobering experience. In brief, Noah will be having a trial of a drug called Desmopressin / DDVAP later in the year... this may stimulate the small amount of platelets he does have to work as they should do. It will mean a 3 day hospital stay... as well as a few side-effects. However, if it does work on Noah, it means we can keep a nasal spray at home to use in the event of a small-moderate fall (a big fall or cut will still need to be treated by a platelet transfusion in hospital), in addition to the Tranexamic Acid he already uses. You can read more about this drug if you click here . Noah was also tested for Coeliac Disease and I was tested for Platelet Function Disorder... Maya was delighted not to be tested for anything!!

23 April 2010 - Fun Cup car sponsors funny blood!

Track Torque Racing Ltd has begun the 2010 Fun Cup season by sponsoring funny blood! Track Torque Racing is owned and run by a team of racing enthusiasts, who know how to enjoy racing and how to allow others to get the same enjoyment from the sport. They are based in North Yorkshire and have had an impressive track record when it comes to racing and who drives with their team. Watch out for the funny blood stickers on a race track near you!!

23 April 2010 - We've started with a thud!

We're very proud to announce that we've been recommended on the Thudguard website ... providers of the only Infant Safety Hat in the world that complies with safety standards .

18 March 2010 - Website launch!

The launch of the funny blood website was very exciting - mainly for Ruby - altho' Guy C and Jase breathed a sigh of relief too!!! Friends and family gave some great feedback - thanks very much!! Some of your comments are below:

• 'Excellent!' (Vicci)
• 'Wow, the site is fantastic!' (Renate)
• 'Thank you for your email and link to the Funny Blood website, I like the design of it and reason for it. I'm not sure if you are aware... but I suffered from similar condition which saw me on steroids for several years before I eventually had to have my spleen removed. If I can help raise awareness then please ask' (Mike)
• 'It looks great... I'm very impressed!' (Kaz)
• 'Well done you! I've been on "funnyblood" and it's fantastic. You are brillant to raise awareness and help others in the same situation as yourself and Noah. Big hugs to Maya, Noah and their very clever and thoughtful Mammy!! (Linda)
• 'I LOVE the website, it's amazing!' (Lisa)
• 'Well, what can I say?! It's fab! You have done really well. You must be really pleased. Just give me a shout if you think I can help with anything?' (Sarah H)
• 'Congratulations!! Just checked out Funny Blood, Wow!!! You have done an amazing job, it is a fun and informative, a wholly user-friendly website. You should be very proud pet!' (Mel)
• 'I love this... I'm adding it to my facebook page!' (Charlie)
• 'Ruby, the site's fantastic! Well done! I've no doubt you'll receive loads of hits. If there's anything we can do, please just shout' (Catherine, Simon and Issy)

16 March 2010 - Up, up and away!

Thanks to a grant from the Family Fund (www.familyfund.org,uk) and the fabulous assessor who met Noah and me... we now have the funds to buy the materials for a low-level climbing frame and some matting for the grass to ensure that Noah can climb in safety! Whilst some people have expressed concern at Noah actually climbing on a frame (surely he will somewhere else if he doesn't at home?) I feel that Noah should have the same experiences as every other child. Of course, I have to be mindful to ensure his safety i.e. that he wears his helmet, that the frame is lower-level than usual and that there is safety matting, which has a critical fall height of 3m (for a child without a blood disorder, obviously!) Noah's Grampy has designed the frame and is in the process of building it, as you can see in the photos!