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…
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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…
Fight against ‘Bubble Boy’ syndrome @ Daily News
Fight against ‘Bubble Boy’ syndrome Monday, January 28th 2008, 4:00 AM Vicki and Fred Modell want to spare others their pain. Through the New York couple’s efforts, hundreds of thousands of newborn children around the world will be screened for Severe Combined Immune Deficiency (SCID), or “Bubble Boy” syndrome. SCID has many forms but virtually…
Why parents can’t stop cuddling little Rhys
Why parents can’t stop cuddling little Rhys Jean Parry, South Wales Echo A YEAR ago Rhys Harris’ family dared not think about 2008. Each and every day was a fight for little Rhys, as he battled with a rare genetic condition called Nemo, which attacks the immune system. Even after the six-year-old had a life-saving…
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…
Miracle boy Rhys stuns doctors after life-saving op via icWales
by Nathan Bevan, Wales On Sunday IT’S the Christmas they thought he’d never see. This time last December the parents of little Rhys Harris were told that because of an ultra-rare genetic illness their son would have less than a year to live. But now the courageous six-year-old from Newbridge has amazed doctors by being…
Six-year-old home after life-saving transplant
by Madeleine Brindley, Western Mail A SIX-YEAR-OLD boy has left hospital less than two months after receiving a life-saving bone marrow transplant. Rhys Harris, from Newbridge, was discharged on Saturday after living in a “bubble” to protect his new immune system. His family – parents Kevin and Dawn and brother Morgan – are…