Bubble wrapped boy returns home Jul 13, 2008 by Nathan Bevan, Wales On Sunday HE looks like any other seven-year-old with a happy-go-lucky gap-toothed grin. But Rhys Harris, from Newbridge, has a special reason for such a big smile. He’s back home in Wales safe and well after almost a year away battling a rare…
NEMO Gene
Boy in the bubble can play in the park again
Boy in the bubble can play in the park again Jun 12 2008 by Abbie Wightwick, South Wales Echo He couldn’t even have a hug from his mum for fear of infection, but after a lifesaving bone marrow transplant at Newcastle General Hospital little Rhys Harris is on the mend. Abbie Wightwick finds the family is now…
Finding NEMO’s Happy Ending
04 June 2008 Finding NEMO’s Happy Ending A young boy has reputedly become the first child in the UK to be cured of a rare genetic illness. Rhys Harris, 7, from Newbridge, south Wales, has survived treatment, which has given him a new immune system. Rhys had to endure living in a ‘plastic bubble’ – which ensured…
Giovanni doing better
From his Dad blog: Saturday 6:30: Giovanni is coming strong: The vent is off tomorrow. He’s still sedated but further taking command of his respiratory system, his vent numbers ranging from high 5’s and over 10, and that’s enough to remove the vent. His femoral line is being pulled, his cultures are negatve ruling out any infections including pneumonia, and his white…
More Prayers for Giovanni & Simon
From Giovanni’s Dad blog: Giovanni is once again in a struggle for life, yesterday was yet another battle he has fought in his war for life and I can only hope that the master of his destiny is friend and not foe. Giovanni is currently stable but he is in serious condition and could die….
Prayers for Giovanni
Giovanni is a boy with NEMO from New Hampshire, he had his transplant 1 year ago. This from Giovanni’s Dad blog: Giovanni is still on the ventilator, and the RSV has spread into his right lung taking its course. Giovanni’s heart is spiking to 174, and the team feels his blood cells are dry, so…
Conner doing well!
Coner is 220 days post transplant. The following from Conner’s Mom Blog: We’ve learned that Conner’s restrictions or precautions have essentially been lifted and as far as his immune system is concerned he has recovered from his transplant! What an incredible coincidence that Conner’s recovery has come to light during Holy week! His journey took him…
Teen still mending from bone marrow transplant
By DOROTHY SCHNEIDER Even before the holiday season, 13-year-old Conner Smith was feeling a little like George Bailey at the end of the classic film It’s a Wonderful Life. “He had lots of friends who showed him how much they cared about him,” Conner said. “Our family and friends have been like that too.” Conner…
The Genome: A One-Minute Explanation
Spirit of Giving – Sister Savior – Stem Cell Research
SISTER, SAVIOR By Kate Kruschwitz Children’s Immunology chief Raif Geha, MD, and gastroenterologist Samuel Nurko, MD, MPH, struggled to bring Andy’s infections under control. Meanwhile, Jordan Orange, MD, PhD, an immuno-genetics specialist, searched for clues to Andy’s condition. Orange was conducting research on the immune system’s master switch, the gene NF-kB Essential Modulator, or NEMO….