I am Herbie’s mum, I am also mum to three other children, his siblings, Rufus, Kitty & Lily. I have a fabulous husband, Dan, and together we are strong. I am a Primary School Teacher, I love music and I talk too much…
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Living with NEMO 
Hi Em. It’s so lovely to read about what’s going on. It makes you realise what amazing things can be done. Herb looks so good and surrounded by Moshis! I can remember Ollie’ s Moshi phase so well I thought it would never end . . . It is so great when they have such enthusiasms, and so useful.
We’re thinking of you all, all the time. It’s so great that you’ve all got such strong families as well.
Lots of love
Mollie (and and All!)
Thank you Mollie xxx
Hi Emily, I hope you don’t mind me posting a message on here but I tried through my FB but I don’t think you received it?. I have just seen your wonderful children on the GOSH FB page. I watched Herb on the GOSH programme a while ago and my heart went out to you. I have also been on a very similar journey to you. My daughter Heidi was born with a very rare Immune disorder called Autoimmune lypmhoproliferative syndrome type 1A or ALPS for short. She was under GOSH until she was 18. At 18 she got Hodgkins lymphoma because of her ALPS . Her syndrome pre-disposes herself to Lymphoma. Because she had out grown GOSH she was treated at UCHL at the fantastic Macmillan cancer centre. Sadly at 21 the cancer returned and the only option was to give her a stemcell transplant from her sister who did not have ALPS (I have it and 3 of my children have it but we are all generally well) The plan was to cure the cancer and cure ALPS. She had the SCT in November last year and was very poorly for a few months with the CMV and EBV viruses, She also developed Post transplant Lymphproliferative Disorder was was horrendous but she pulled through! Luckily she didn’t get any GVHD. If I remember rightly Herb suffered with GVHD? She is now 22 and doing really well at 5 months post transplant.I thought I would write to you as we have had very similar circumstances and have probably had treatment for our children from the same doctors. I still have never met an ALPS patient . Heidi was the first one to be dianosed at GOSH and I think Britain. I am so pleased that your family are doing well and hope the future looks bright. Love to all. Gracexx
Hi Grace,
Thank you so much for your message x I’m sorry that Heidi & your family have been on such a tough journey but happy to read things are going well xx Yes Herb did have GVHD , although it was triggered by a drop in meds that wasn’t noticed by the doctor’s 😩
Much love to you all for continued good progress xx
Emily