Jack’s story

Ever heard of Kawasaki’s Disease?  Probably not. The disease is that rare that only eight in every 100,000 children under the age of 5 are diagnosed with it each year in the UK.  Our son Jack was one of the unlucky ones.

                It all started in April 2013, when our son was eight months old.  Jack was taken into Russells Hall Hospital as he was very unwell.  After two weeks of countless tests, doctors still had no idea what it was that was making him so ill. After ruling out literally every other possible cause and following in-depth discussions with Birmingham Children’s Hospital we were eventually given the diagnosis of Kawasaki’s Disease.  Jack was given a white blood cell transfusion straight away and was put on a high dose of Aspirin.  We were then transferred to Birmingham Children’s so that they could assess Jack and confirm that it was indeed Kawasaki’s Disease.  We were then allowed to go home a few days later.  A few days after returning home Jack’s temperature spiked again, a common symptom of the disease, and we returned to Russell’s Hall for another transfusion which, this time, seemed to do the trick.

                At around eight weeks after diagnosis all children that have been diagnosed with Kawasaki’s Disease have to undergo a heart ultrasound as a follow up procedure.  Around 95% of children who have had KD will have either none or minimal heart or coronary artery defects and this is what we expected to see on Jack’s ultrasound.  Unfortunately he was in the unlucky 5% category and the consultant found 3 giant aneurysms in his coronary arteries.  Jack was immediately admitted to Birmingham Children’s Hospital to start taking Warfarin in addition to the Aspirin he was already taking.  After starting his medication, and once the doctors were happy he was settled on it, we returned home knowing that Jack would probably be on his medication for life and that he would always be slightly different to other children.  Our dreams of him becoming a Premiership footballer and looking after us into our old age were shattered (no contact sports allowed!).  

Over the next year, we found ourselves having to attend either heart scans or Warfarin clinics at the hospital and during times that Jack’s blood results were haywire we were attending up to four times a week.

                As parents, we hated having to drag Jack to hospital so many times and having to think about where the nearest hospital was if we were going on holiday in case we needed his blood tested. After twelve months of countless hospital visits, we were contacted by a local charity called Young at Heart who we’d previously registered Jack with as they’d suggested it at the hospital. They offered to gift us an INR machine, which could be used to self-test Jack’s blood at home.  We received Jack’s INR machine at the beginning of this year and it has made such a massive difference to Jack’s quality of life, we can quickly do the test after breakfast and ring through the result instead of taking a morning to travel to and from the hospital and wait for our turn at the Warfarin clinic.

This is why I have decided to raise money for Young at Heart.  They have helped us so much granting us that machine and have allowed Jack to have a bit of his childhood back.  Young at Heart is a charity that was set up in 1982 to offer help and support to families of babies and children diagnosed with heart conditions.  All of the children and their families they support have spent many weeks and months in hospital undergoing treatment for heart abnormalities with some having to undergo major heaty surgery. Some children have had numerous operations throughout their short lives.  Sadly, some do not survive and for others their only hope is a heart transplant.

Young at Heart provides a support line and regular ward visits for parents during their time in hospital with their sick children and it works closely with the Heart Unit at the Birmingham Children’s Hospital.  One of the charities aims is to bring the families of heart children together at social events, where they can meet with other families, share experiences and feel that they are not alone in what they are going through.  These events also allow the children make new friends and have a bit of fun. The children love the social events, they have been through a lot and enjoy being with other children who also have `special hearts’.  We have been to a few of these events and Jack has loved them.

On a final note, Jack is a doing really well and plays and runs riot like any other 3 year old.  Although if you do see him in the park, we’ll be the annoying parents following him round making sure he doesn’t fall off anything.  He enjoys life and is the most pleasant of little boys.  He also takes his four lots of meds a day like a little trooper, long may that continue!