News

GOOD NIGHT SWEET JORDAN

Comments (2)

10 January 2008

NINE YEAR OLD LOSES BRAVE BATTLE ... YET SISTER FIGHTS ON 

He touched the hearts of the whole community – his mother Tina saying everyone who met him ‘fell a little bit in love with him’. But five years after he was diagnosed with a rare genetic illness, Jordan Harris has finally lost his brave battle, slipping away on Boxing Day, surrounded by his doting family.

But his grieving parents know that they will have to carry on the fight – not just in his memory but for the sake of their young daughter Jasmine. The five-year-old was cruelly diagnosed with the same illness in 2005. “We won’t give up trying to find a cure, for Jasmine and all children with late infantile battens,” said Tina.

The nightmare began for the Harris family when Jordan was first diagnosed with late infantile battens in 2003, two years after he began to suffer epileptic seizures.

His GP immediately referred him to a neurologist, but after several tests and MRI scans came back normal, Jordan was prescribed with anti-convulsion drugs. But in the spring of 2002, Jordan began tripping and falling over unexpectedly and further tests indicated that the epilepsy was a secondary condition. More blood tests were inconclusive, though there was significant shrinkage of his brain. By October 2002, Jordan was unable to talk or walk unaided and needed help with feeding. Finally, on January 13 2003 he was diagnosed with a neurodegenerative disorder called neuronal ceroid lipofuscinosis, also known as late infantile battens.

The disorder is extremely rare – only 500 children worldwide are affected – and doctors told parents Tina and Mark that the disease was fatal, with no known cure. But the Rotherhithe couple immediately threw themselves into the daunting task of finding a cure – contacting experts across the world, learning about the illness, and setting up the Jordan Jay Fund, with local people sending donations to fund the expensive research.

Two years on, Tina and Mark’s worst fears were confirmed, when their daughter Jasmine, then just two, also had the illness. But in spite of the devastating news, the couple refused to give up hope.

In October 2005, the siblings took part in gene therapy in Cornell University in New York, which was believed to have slowed the disease down a little. And in March last year, the family heard that pioneering stem cell treatment was taking place at the General Navy Hospital in Beijing. After much consideration they decided to fly to China, where both children were treated.

Right up to last month, Jordan, now nine years old, had been in better health, not requiring hospital treatment, and attending Cherry Gardens special school in Bermondsey. “On December 14 he even took part in the school’s Christmas play,” said Tina. “He was smiling and laughing.”

But on December 18 Jordan started fitting. He was rushed to Evelina Children’s Hospital, but doctors were unable to stop the seizures. “Even when he was heavily sedated he was still fitting,” Tina said. He was brought back down to intensive care and intubated, as his neurologist, Ruth Williams, rushed in from her Christmas break to treat him.

On Christmas Day, Jordan stopped breathing three times, and on Boxing Day, Tina and Mark made the hardest imaginable decision. “His little body had just had enough,” said Tina. “Doctors had looked at his X-rays and could see how much damage had occurred just from the day before,” said Mark. “His body was fighting so hard.” Finally, at 3pm that day, they gave the go ahead to take out the tube. Joined by both their families, they began to say their heartbreaking last farewells. For the last few hours, Tina and Mark cuddled him in bed – “he had become very peaceful” said Tina – and he finally passed away at 9pm that night.

A private funeral service was held last Saturday, with just family and four of Jordan’s teachers, from Alfred Salter and Cherry Gardens. “We just want to say such a big thank you to F.A. Albin & Sons and Barry Albin, who held the service for us. They were such a huge support and it felt like they cared so much,” said Tina. A memorial plaque has been placed in the Albin Memorial Garden, where they hope to plant a tree and place a bench in his memory. A memorial service for Jordan is being looked at for the summer.

The battle is not over for the family. Jasmine, who will be six in March, will be back in China in the spring for further treatment. Specialists at King’s College Hospital believe the disease originates in an area of the brain known as the talamus, which is where surgeons will concentrate their efforts.

And while the hunt for a cure goes on, money is desperately needed to fund research. An astonishing £200,000 has been raised through the Jordan Jay Trust and you can still donate. To do so, visit: www.jordanjaytrust.com or send your cheques, made payable to the Jordan Jay Trust, to the Southwark News offices.

There is one ray of light for Tina and Mark. The couple discovered last year that Tina had unexpectedly fallen pregnant. Three agonizing months ensued as they waited for tests to be carried out, to discover whether the child would have battens. “We just couldn’t have gone through with it if that had been the case,” Tina said. To their huge delight they were given the all clear – and they now have a three-month-old daughter, Mia. “She’s our little life saver” said Mark.

The family have been deeply touched by the support they have received from the community throughout the years. “There are so many people we need to thank,” said Tina. “Mums from Alfred Salter, where Jordan used to go, still come up and ask about him. His teachers at both schools have been so caring. His GP, Dr Morinnan, from Surrey Docks Health Centre, has been there every minute of the day for us, as has his neurologist. And the doctors and nurses at Evelina took so much trouble to explain what was happening and were very compassionate.

“Jordan brought out the best in people. I think everyone who met him fell a little bit in love with him. His leaving us has broken our hearts.”

Read the 'news' comment here...

---

Social Bookmarks:
del.icio.us Digg Newsvine Reddit Facebook StumbleUpon
Wikipedia: social bookmarking

---

Comments (2)

1. At 09:30 AM on 11 Mar 2008, Rachel and Pete Griffith wrote:
Dear Tina,Mark,Jay and Mia, We are so sad to hear that Jordan has died. Our thoughts and prayers are very for you at this very hard time. We are delighted to hear also about the birth of little baby Mia, miracles can and do happen even in the darkest days. You are an amazing family who have managed so much in recent years, your caring parenting is a credit to you and an inspriration. Please contact us if we can do anything to help you at this difficult time. Sending you all our love, On behalf of all the parents and members of the Batten Disease Family Association. Rachel www.bdfa-uk.org.uk BDFA.info@btinternet.com
Report this Comment

2. At 04:07 PM on 09 Apr 2008, Annette Dacosta wrote:
Dear Tina, Mark, Jasmine and Mia. Our hearts go out to you all. I never got the chance to meet Jordan personally but I feel like I did. The pictures of him on your websites are truly beautiful and remember that he came into your lives for a reason. Maybe you wouldn't have Mia if it wasn't for Jordan? Who knows. I made a promise to myself not to grieve for my child whilst she was still alive and. although it's hard, it works. We are keeping you close to our hearts and you know where we are if you need anything. Much love to you all. Annette, Graham, Sacha, Chloe and the new baby xx
Report this Comment

Post a Comment

Please note Name and E-mail Address are required.

Name
E-mail Address (not displayed)
Comment (you may use HTML tags for style)
Enter Text Shown in Picture*
Comments are moderated, and will not appear on this article until the comment has been approved.