Funny Blood was founded by a Mum on a Mission, so we have a keen interest in the parenting of children living with PFDs. This information has been collated by parents of children and, as such, is not the view of medical professionals. However, we do have a team of medical Advisors working with us to ensure that the medical information is 100% correct.
Ruby’s view is to provide her son with the same opportunities as other children, always being mindful of the consequences (and caring for her daughter too!) So, in the early years, Noah wore a helmet; either from Thudguard or via the local NHS Orthotics team (please see our Links page for more details). However, in later years Noah’s view of wearing the helmet changed – as did the knowledge and understanding of his condition – which has meant taking other precautions as well.
We believe that information given to both the child and family (and other carers, including school) is paramount in managing care and activities. Activities such as contact rugby, boxing and ice-skating are not advisable and there are so many great alternatives especially when children are younger.
There are many items of safety equipment to choose from which could allow your child to play the same sports as others. Shops like Argos, for example, stock the usual knee and elbow guards although other options are given and made by your local NHS Orthotics team (a GP referral is needed). There is also safety matting that can be put over hard surfaces like a patio or under grass so it can grow through it. Whilst this matting can be expensive, grants may be available from Charities such as The Roald Dahl Foundation. Please see our Links page for further details.
Some families have an ‘emergency bag’ on hand at all times to ensure they’re ready to go to hospital if necessary. In Noah’s bag, Ruby carries medication (including Tranexamic Acid and Desmopressin) spare and overnight clothes, maps, contact numbers, phone chargers, money and snack food. In fact, all family members have emergency bags packed ready for action.
In addition, Noah’s school keeps a bottle of Tranexamic Acid in a safe place and the Local Authority have added a ‘flag’ onto their systems to alert Paramedics and other medical staff to Noah’s condition. Both home and school addresses are flagged with details of his condition and his pathway to care i.e. that he must go to Birmingham Children Hospital’s Haemophilia Unit (or the most local Centre, should they be away from home).
These are our ideas and suggestions for help, so if you have any others that we could add to the website then please do get in touch via the Contact page. We’d love to signpost as much information as possible to support families living with the condition.
Living with Platelet Function Disorders
Mel Barker is a Mum of 7 children, 5 of whom still live with her at their home near Castlemorton in Worcestershire. Mel found out that both of her youngest children – Angel Star (8) and Summer Sky (5) – have Platelet Function Disorder in 2013. Please take a moment to read what she has to say about living with PFDs
Mel knew that Angel had something wrong with her since she was around 3 years old and had seen her GP about Angel’s bruises on a number of occasions before being referred to Worcester Royal Hospital to see a Consultant Paediatrician in 2008. Since then, Angel was referred to Birmingham Children’s Hospital where she is looked after by Consultant Haematologist, Dr Jayashree Motwani. Since then, a number of Angel’s siblings have been tested and it’s now been confirmed that her younger sister also has a mild form of Platelet Function Disorder.
Mel said that when she found out about Angel’s condition she was:
“relieved to know that there was something wrong, because I’d always thought there was. Since I found it, my life has changed. Angel is often angry or frustrated with me for not allowing her to play as much ‘rough and tumble’ with her brothers as she used to. You have to be careful and I’m always checking that she’s ok, that she doesn’t have any big bruises. I’m always worried.
Sometimes Angel has Tranexamic Acid (to help blood to clot) and Mel found that this was also a concern:
“not only does it worry me that there may be side-effects but we were told that we’d have to collect the medicine from Birmingham Children’s Hospital every time we needed it, which is a really long way from our home and costs quite a lot of time and money to get. Of course, I’ll do anything to help Angel, but having to go to Birmingham for medication is really a lot of hassle“.
Mel said that the entire family were all still:
“adapting and coping with Platelet Function Disorder to understand and manage the big change in our lives. We have a bag that we carry around at all times so her medication and helmet are always with us. We’re having pads made for Angel so she can join in with the games that other children play, without it leading to a hospital visit. Angel will sometimes wear a helmet if what she is doing is thought to be dangerous and could cause a head injury. It’s hard on Angel – and Summer – although their brothers are understanding”.
The whole family are delighted to be able to support Funny Blood. Mel said that:
“I’ll do anything I can to help Ruby with Funny Blood’s mission, it’s so nice to know that someone’s doing something to help someone like me cope with Platelet Function Disorder”.