Would you consider leaving a link on this page to Dr Dun's work, and Jemima's Wish so that after donations close, people could still donate directly if they wanted to? I have loved reading the comments that show what a wonderful soul Jemima was here on earth - and your and her words are inspirational.
Hi Justine — thanks for your question and kind words. So thoughtful. We (Oliver and I) have established an incorporated charitable trust and website: jemimaswish.com where people can learn more about Jemima and DIPG, donate, and also read the blog that has media / recent awards she has been given. Hope you have a super summer, and thanks again for your question. RG
Hey Ray. I remember Jemima from kindy and Houghton Valley. She was so kind to my ADHD son, Conor, and often played with him when his "fullonness" stopped other kids playing with him. She laughed at his jokes and seemed very fond of him, she was genuinely a little, kind, caring Angel. I was so incredibly sad to hear of this, as was Conor, who remembers her vividly. Wishing you all so much love and please give Jemima a hug from Conor and I xxx
Hi Teri. I remember you and Conor of course. Thanks for getting in touch.
Jemima had lots of friends through her life that weren’t neuro-typical. It was one of her special qualities but she never thought a thing of it. She was just friends with kids in which ever way they presented. We could all take a leaf out of her book there. I hope you and Conor are well and happy. All the best xxx
Hi Ray - will you and your family continue to be involved in the work of Dr Dun? I was weeping as I read of Jemima's "journey" in the paper and of her extraordinary fundraising skills - oh my goodness! As a family, you have clearly done everything in your power to walk this "journey" with Jemima, by accessing the best possible care etc. I worked for 6 years with people with Motor Neuron Disease, some of whom became very close friends, and with whose families I am still in touch. I continue to be supportive of the ALS Society (Canadian's call this disease ALS = amyotrophic lateral sclerosis) and to follow and support the research, particularly that of the brilliant Michael J Strong, who is now head of the Canadian Institutes of Health Research. Dr Dun sounds like another Mike Strong - a researcher with a heart for this disease and for those who have it. It's clear that Jemima knows how lucky she is to have him in her corner. I do hope you keep in touch with Dr Dun - Jemima's legacy will be in the work she's funded through her selfless act. Bless you all - may this final walk with Jemima be filled with love and wonderful memories that will never fade. Many of us who have never met you are walking right beside you and praying for peace and a gentle passing for Jemima. x Sue
Hi Susan. Yes, me and Dr Dun have correspondence back and forth and we’re of course now heavily invested in his work through Jemima’s Wish.
He is a genuinely good guy as well as incredibly talented in his field. So our exchanges are always a pleasure and connect us to our girl through her selfless acts this year.
You can take much pleasure and pride in the work you’ve done with the ASL community. im sure you enriched many lives there.
Ngā mihi. Ray x
Hi, this is a comment instead of a question, I hope this is ok, would you guys please consider extending this fundraising for an extra 7 days please, it would be so lovely to see more money raised for this.
Hi Leanne. Sorry for the late response but consider it done 😅 with Jem crashing on Sunday it seemed like a good idea to let it close, but we’re happy to have it reopened now. Yesterday Jem received a lot of support by way of donations and messages and she knows it’s been reopened. Thanks for your message and support x
This is not a question more a comment and hopefully a bit of support.
First off I understand the pain you and your family are going through and think that Jemima is a brave and courageous young lady, that deserves the earth. We recently lost our 20 year old son to a Diffuse Midline Glioma. He presented with chronic headaches and was admitted to Auckland hospital where the amazing surgeon tried to remove the tumor. As it was in the brain stem they told us it was terminal. He fought hard but died 8 weeks later. He was our 3rd child we have buried now but have the comfort of knowing Daniel is in heaven with his 2 sisters.
I hope and pray that you have as much time with Jemima as you can developing memories to keep forever. Our love and prayers go to you and your family and friends.
Claire I am so sorry for your loss.
Both for Daniel and your two daughters.
Walking through the fire with our babies is both our privilege and our heartbreak, isn’t it?
Words are largely inadequate to describe the sense of loss but thank you for sharing your story with me.
Weirdly Jemima and I have had the best year of our lives together, and with our family, I guess because our time became so precious. It reminds me of this poem by Piet Hein:
Just out of perceptions reach
Sometimes I think I see
That life is two locked boxes
Each containing the other’s key.
With love and thanks, Ray x
I think I know the road you are travelling. In 1991, our daughter Samantha was diagnosed with bone cancer. It had metastasised all thru her and was inoperable. Like you, we got to know Samantha in ways that otherwise might not have happened. I think these young people are amazing. I think what you and Jemima are doing with this wish is fabulous. Hugs to you all. And I hope Jemima is smiling hugely at the response to her wish. I know Samantha would be. Love Darryl
Thank you for your message Darryl.
It’s a dubious club this one we’re in hey. But knowing and sharing these feelings with other bereaved parents does leave us a bit less alone.
Thank you for letting me know of Samantha. I hope you have lots of great memories of her both in health and the closeness born of illness. As bittersweet as that experience is. I do relate entirely.
Take care and perhaps light a candle for our girls today.
Thanks for your reply electronic I hope otherwise you will be up all night. The wonder act of selfless giving is inspirational. While many feel terribly sorry for me and beat the cancer drum. While I too have stage 4 inoperable metastic renal cancer to my bones. For me and I really hope many others who sure may disagree or not like what I say. Yet I am in my mid 50s and I have daughter Jemima's age and I for a nano second try to think how as parent you manage to endure this and also other close family members. I think how come I continue to get more years than was suggested by way of prognosis. While I may still be you in many people's eyes man I feel if we could swap positions do Jemima could get to mid 50's as I had a pretty good bat but 15 seriously. It's so ripped off and while we are in the far too large cancer club. Children or the young as while Jemima is only 15 with the maturity of older
young adults for sure. She certainly gives those who are feeling pity or sorry for themselves need to take a good look and be thankful that they are managing to live with cancer. Sure far from ideal yet Jemima is showing selflessness beyond her years and most adults I believe. Truly inspirational for me and I thank her for that and making tens of thousands of people hopefully thankful and aware of what they have got and how thankful she has been and is. A truly unique human and a privilege to cross paths no matter how sad this may appear I know she has a unique view and understanding apand if only we could all get a little scratch of DNA that could rub off on to us all in order that we may have the gift of her being which can only be special. Its made me reset and reflect. Please thank Jemima for that. Much aroha Tim. I do not seek a reply Ray as your work load may be never ending right now?
This was my very all over the place way of saying Thank You to Jemima with all my heart.
Kia Ora Tim. Thanks for reaching out and for the praise you give my girl. I’m very proud of her; even though I suspect she didn’t / doesn’t realise the full impact her actions have and will have ongoing. Perhaps she will see this legacy bloom over time and have the ultimate understanding one day.
This was the most obvious and natural thing in the world for her to do. Absolutely in keeping with her personality and how she lived with an open heart and open mind.
I hope you keep well. No one deserves a cancer diagnosis and certainly not those that are without a cure. I’m happy that you are grateful for your years. As is Jemima. While she only got 15 of them, she says they were glorious. And for her, a lifetime.
Take care. Ray x
Im so sorry for what your going through, sounds like Jemima is so strong, you must be extremely proud of her.
This may be a bit of a random question but my daughter is almost 2 and she has what they think is a brain tumor in her cervical medullary and it is defuse also (not a sold mass). where abouts is Jemimas located in her brainstem?
We found my daughter Izzy's in February too but it was an accidental discovery. It is currently stable so we go in every 3 months for an MRI until it starts to grow. They tried to do a biopsy on it but it was unsuccessful so they haven't really been able to tell us much or maybe they just don't want to.
I am just interested in the location of the tumor and the fact that it is not a solid tumor, I would just like to know if it is similar.
Sorry for the novel.
Hi Ashleigh — sorry to hear of your daughter's tumour and unsuccessful biopsy.
Jemima had a craniotomy and stereotactic biopsy at CHOC in Christchurch to find out more about the gene mutations present. That might help you with what to ask for if you want to take that further — however, if your girl is stable, the doc's might advise that you to 'not go looking for trouble' as I believe brain biopsy's aren't without risk. There are some other ways doctors are now testing for brain cancer through blood and urine, however, I don't know too much about that I'm sorry.
I would think your doctors aren't holding information back from you, but keep asking a lot of questions. You can even ask 'is there anything you're not telling me?'.
I've found Facebook groups to be a good resource for these rare cancers. Even though I'm not a FB user in my regular life. You'll find people who understand where you're at, are clever researchers, and open books when it comes to sharing information with you.
All the best and lots of love from our family to yours, and especially Izzy.
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