Useful links

Medical information

Jayashree Motwani, Noah's Consultant at Birmingham Children's Hospital (Haematology and Oncology Department as well as Clinical Governance and Audit lead) has confirmed that his condition is very rare. She has provided me with some medical information as well as this link to ukhcdo.org explaining that "there is a guideline for management of children with platelet function disorder, published by the UKHCDO. Not all of it is relevant to Noah. Also, here is the link to haemophilia.org.uk where Funny Blood is mentioned (scroll to the end of the page).

There are a number of sites that explain about the disorder that Noah has, so here are the ones I have used.

The Haemophilia Society
The Haemophilia Society is a well recognised group and confirm that Platelet Function Disorder does actually come under their remit with working with blood disorders. However, they do not have a lot of information on this particular blood disorder due to its rarity. Their website provides an excellent information service for a lot of blood disorders and has links to Haemophilia Departments in the UK and Worldwide … if you're planning a trip away, you must contact the local Haemophilia Department to exchange details… you get used to it!

Particularly useful pages:

• Haemophilia Centres

World Federation of Hemophilia
The World Federation of Hemophilia (WFH) is an international, not-for-profit organisation committed to improving treatment and care for people with haemophilia and related bleeding disorders. The Montreal-based organisation was founded in 1963 by the charismatic Frank Schnabel, who was born with haemophilia. The WFH carries on Schnabel's work through an extensive network of volunteers, national haemophilia organisations and healthcare providers in more than 100 countries.

Particularly useful pages:

• Report: Platelet Function Disorders (in Adobe PDF format)

The Canadian Hemophilia Society
The Canadian Hemophilia Society strives to improve the health and quality of life for all people with inherited bleeding disorders and to find a cure. These bleeding disorders include hemophilia, von Willebrand disease, rare factor deficiencies and platelet disorders.

Particularly useful pages:

• Article: Platelet Function Disorders

emedicine.com - Article: Platelet Disorders
A useful article about the diagnosis and treatment of platelet disorders.

Family support

I have been in contact with a number of charitable and also government funded organisations to help support my efforts to maintain Noah's safety… whilst undertaking all the 'normal' activities children of his age enjoy. I recommend contacting the following, which may help you to secure funding or provide you with advice on where to turn should you need help (contact the CAB or local Family Information Service if you need help with the DLA forms, they're a nightmare!)

The Family Fund
The Family Fund helps families with severely disabled children to have choices and the opportunity to enjoy ordinary life. It gives grants for things that make life easier and more enjoyable for the disabled child and their family, such as washing machines, driving lessons, hospital visiting costs, computers and holidays.

The National Association of Family Information Services (NAFIS)
The National Association of Family Information Services (NAFIS) is a registered charity that supports, links and promotes a network of quality Family Information Services across England, Wales & Scotland. Family Information Services provide information, advice and assistance to parents, carers and professionals on the range of children, family and young people’s services available within their area and are an ideal starting point for any family-related query you may have.

Particularly useful pages:

• List of all Family Information Services across the UK

Contact a Family
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability. Contact a Family's mission and purpose is to remove the barriers imposed by society which prevent families with disabled children achieving their full potential, and to empower these families to live the lives they want to lead. Last year, Contact a Family helped over 300,000 families with disabled children.

Safety equipment

Thudguard
In order to minimise risks, Noah has protective head wear and constant supervision to prevent the risk of falls or other injury… as well as stair gates everywhere! This helmet was bought from Thudguard (via Safetots) who have been fantastic in helping me find other routes to buy protective gear. This helmet is recommended for children up to 2 and Thudguard do not yet have one for older children.

NHS Orthotic Services
In terms of protective helmets, I have since found out that the NHS's Orthotic Services can provide safety gear. I realised this because Noah also has talipes and needs special boots… the same Doctor advised me that the NHS can provide helmets with a GP referral. Well worth knowing!

Other contacts

Little Blossoms Day Nursery / Clives Fruit Farm
In an effort to raise awareness and future fundraising I have gained the support of the excellent nursery that Noah attends, Little Blossoms Day Nursery… whose owner also has a Fruit Farm just around the corner; Clives Fruit Farm. Jane Clive has kindly agreed to help support me in raising awareness and funding in the future, so watch this space!!

Track Torque Racing Ltd
I am very lucky to gain sponsorship from race team, Track Torque Racing Ltd in North Yorkshire, who have agreed to support this site and raise awareness of Noah's condition. They will be racing this season with 'funnyblood' stickers on all their cars!!!

And finally...
Last but not least, huge thanks goes to my cousin Guy Covins at C2 IT Marketing for his amazing help in setting up this site and also my good friend Jason Wickens at Viper Design and Fotoviva Art Prints in hosting the site and providing me with invaluable advice! Thank you!! ;o)