Over 6 years and 100 posts ago we discovered Ellen died of Neonatal Hemochromatosis and we embarked on a journey – with the help of Dr Whitington’s new treatment – to try to have our own family.
It’s taken a long while. There are still lots of days when we catch our breaths meeting or seeing a child about the age Ellen would be. We still miss her a lot, but the ache has gone.
There is so much joy. Ellen gave us the chance to be parents to Harry and Cara and it’s been wonderful. Harry and Cara are both happy and healthy.
The treatment is now being used a lot more widely, there is a lot more information out there, and there are more support networks. In the last month a group has started up at:
http://health.groups.yahoo.com/group/Neonatal_Hemochromatosis
There are already about 40 members and it’s very active. People are sharing their experiences and helping others by doing so. That was always the purpose of this blog. Hopefully, in some small way, we’ve been able to help others by sharing our story.
So we’ve come to the end of the last post on this blog. We’ve no plans to take it down, and feel free to email us if you have any questions or want to leave comments. Thank you so much to the people who’ve contacted us over the years, sharing your experiences and providing your support has been invaluable in our journey. We wish you all the best on yours.
Lots of love Trent and Mary
November 5, 2011 at 7:35 pm
Hi my name is Ariel I live in the United States . On June 30th 2011 I gave birth to a baby boy, I delivered him by c-section about 8 weeks early because he was no longer gaining weight inside my womb. He was born healthy with no complications at all. Soon after birth evrything took a turn for the worse. Baby “Jaylen” became increasingly ill and passed away on the fourth of july due to brain hemmorage and liver failure. I had an autopsy done which came back positive for Neonatal Hemochromostasis. I am only 19 years old and found out I am pregnent again and I am very scared the same thing will happen. I am very thankful and optimistic, however. Can you please explain to me how the treatment process works , if its painful, and any physical side affects it had on you?