Submitted by Kim

Hi all, my son Oliver was born at 30 weeks and weighed 3lb on the 20th march 2001, he was ventilated, NGT fed an had a picc line sepsis at a week old, eventually Oliver was well enough to come home, at 2months old weighing 4lb. Oliver had feeding problems, so was tube fed, eventually he had a gastrostomy fitted for easier feeding and less vomiting. But he developed very well, an was very bright, he could speak very well, and learnt to walk at 18mnths old, in time Oliver’s bowels became worse he had inflammatory bowel disease, his immune system started to fail him, and by age 3 was very sick, he had to have regular transfusions for his immune system and spent months at a time in hospital, his legs started to fail him an he went into a wheelchair specially made as he was still very small, only 18lb by now and size of 12-18mnth old.

Eventually his bowels got worse still, an he was then fed with T.P.N through a picc line in his arm. his bowel would paralyze and it was starting to waste away. in this time he suffered many infections, an pneumonias due to his immune system, but still no diagnosis although he spent many months in an out of Great Ormond Street Hospital. Eventually at age 4 and half the doctors done more in depth testing after seeing his heart was now failing too, and he was suffering very high blood pressure. Oliver caught a line infection again on 19th Jan 2006, and during this time, he also caught E-Coli, enterococcuss, Stapholococcuss,severe septeceamia,and a myco plasm in his chest. after 8 resuscitations Oliver passed away aged 4yrs an 10months, since, we have found out Oliver had progressive immune disorder, which was terminal.
i had the best years of my life with Oliver, an I miss him so much.

I wish i had known he had a terminal illness. this illness is very rare with only a handful of children known to have it, but all have been premature babies.
please keep Oliver in your thoughts, to keep his memory alive.

I am now pregnant with a a girl, and she has tried coming very early, 21wks, 22wks, 24wks, an doc's have stopped it each time, I’m now 28 weeks and counting the days hoping I will not have another preemie.

All my love to you all, Kim an angel Oliver. Check out Ollies site