Information on our experience with Neonatal Hemochromatosis (NH) can be found at the following links on our blog site:
- Our Story (describes Ellen’s life from Trent and Mary’s point of view )
- Summary of Treatment (includes some comments from others who have also received the IVIg treatment)
- Posts on NH
NH is a pretty rare disease and so we have also listed some links below to useful websites.
- Children’s Memorial Hospital (This site describes the gestational treatment that Mary had with Harry)
- neonatalhemochromatosis.org Useful site with links to further information and stories from other families. There is a Memorials page with stories from others including Andrew and Stacey who contacted us a while back after they tragically lost their son Teyte to NH.
Finally, we have received quite a few emails from families who have lost children to NH saying that being able to read our story has helped. It has been really touching to read these stories of grief, sadness, loss and hope. If you would like to leave your story as a reply/comment below, I’m sure the families who come across NH in the future will be grateful.