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Losing my Daughter
6 months ago
https://gofund.me/db36cb08
Momo doesn't have long with us. Please help us make her remaining time magical with a small contribution, or a share of this page.
Crossposted from GFM:
Our Story
My name is Shay, though many of you may know me by some handle or another - Rhari or Rhars, most likely, but right now I’m Momo's mom. That’s been my most important identity for 17 years, and it’s been an adventure like no other.
We have learned the heartbreaking news that we are coming to the denouement of Momo’s story, but we aren’t going to let it end in any way other than the heroic sendoff she deserves. For that, we need your help.
Momo has a rare genetic condition called Alström Syndrome. She is a deaf-blind 17 year old girl who lives with kidney disease, Liver disease, Diabetes, inflamed small bowel and an enlarged spleen. Over the course of her life these disease complications resulted in growth failure, and an ICU complication in 2023 has left her with Major Neurocognitive disorder. She is medically fragile and, unfortunately, not a candidate for transplants due to the nature of her underlying condition. She has entered palliative care as of February 2025.
In spite of it all, she has achieved amazing things in her life. She has ridden and driven horses, been a downhill skier, been a member of a rock climbing gym, participated in track and field, become a sculptor and strived to illustrate together with me. She has listened to many books through her hearing aids and through the soft voices of her parents (including all of Redwall, Dad even did all the voices).
Our Rallying Cry
Our call to action now is to be able to give Momo one last grand adventure. She may need her wheelchair more than ever, but she still has excitement, drive and purpose. We wish to foster this as long as she will, and we intend to fight alongside her for as long as she’s able, and so we would like to take Momo to Europe this summer. We would like to give her the grad trip she deserves.
Most of our plans center around France and the United Kingdom:
Momo would like to ride in a train sleeper car and have breakfast on the train.
Momo would like to go to Disney Paris and meet princesses and characters from her favourite films.
Momo would like to listen to a museum tour and touch some of the great sculptures.
Momo would like to feel the warmth of summer and smell all the cheese and bread (her favourite meals all involve cheese and carbs)
Momo would like to bring some friends along with her too.
Momo has shared her own thoughts on the End. She has expressed her desire to join Star Clan (Warrior Cats heaven) and look over us all, giving us guidance and putting challenges in our ways to make us stronger. She is going to pet Toby dog (her first dog) and get to meet her Grandma Shirley (my paternal grandmother) and tell her all the stories about her life. When she told me all these, I cried too. I know she’ll achieve all of these, and I want her to get there having achieved her dreams with us as well.
The Costs:
We have some savings that we had put aside for Momo in her old age, however, with the time being what it is, we are working to access that account now. Those funds are earmarked for her end of life care, comfort and peace, funerary expenses and her eventual internment. These funds may go a small way towards this travel and adventure, but any additional financial help would be welcome.
We have approached other charities, including Make-a-Wish, Starlight Foundation and Variety Children's Charity, but as our wish for travel is outside of the contiguous North America, it doesn't fall within their purview. We totally appreciate and respect those charities for their support and understand their limitations. Due to our diverse, disabled, and queer presenting family, we do not wish to visit the United States at this time.
Other Creative Wishes that Can Help:
For our creative friends, we will share any linework art, songs, voice messages, poems or stories verbally.
For the artistically inclined, her reference picture can be accessed here:
https://www.dropbox.com/scl/fi/b3wj.....1h2po&dl=0 - Momo's Reference on Dropbox
Momo is a double merle cardigan Corgi. She chose the double merle as an external reflection of her genetic disorder, and to share the dangers of double merle breeding in dogs with that gene. As most puppies have some form of sensory loss.
We recommend linework with hatching to represent colours as the embosser can raise those lines and make them clear to her exploring fingers. For songs, she is a fan of folk music like Joni Mitchell and John Denver, as well as poppy music like the Beatles. Her current listening is Chad Lawson, a modern pianist with soft and sad vibes. For stories, she loves tales of Animals and adventure. If Game of thrones had had the characters as anthro forms of their houses, she would have been even more enthralled.
Finally, any amount of words of comfort and support and any shares of this page will go a long way in bringing Momo to her Last Adventure. This point where we hope to tie up all her plot lines, give her a hero's adulation and let her know how beloved a creature she is to us, her community and her world. She may not be with us a long time, but the lives she has touched and the joy and thoughtfulness she has provoked will live with all of us forever.
Thank you for being with us
Shay/Rhari, and Forever the Mom of Momo.
https://gofund.me/db36cb08
Additional charities that have supported us and would welcome donations:
Blind Beginnings
Canadian Deaf Blind Association
Canuck Place Children's Hospice
BC Children's Hospital
Make a Wish Canada
Starlight Foundation Canada
Community Venture Society
Strive Living Society
---
Momo doesn't have long with us. Please help us make her remaining time magical with a small contribution, or a share of this page.
Crossposted from GFM:
Our Story
My name is Shay, though many of you may know me by some handle or another - Rhari or Rhars, most likely, but right now I’m Momo's mom. That’s been my most important identity for 17 years, and it’s been an adventure like no other.
We have learned the heartbreaking news that we are coming to the denouement of Momo’s story, but we aren’t going to let it end in any way other than the heroic sendoff she deserves. For that, we need your help.
Momo has a rare genetic condition called Alström Syndrome. She is a deaf-blind 17 year old girl who lives with kidney disease, Liver disease, Diabetes, inflamed small bowel and an enlarged spleen. Over the course of her life these disease complications resulted in growth failure, and an ICU complication in 2023 has left her with Major Neurocognitive disorder. She is medically fragile and, unfortunately, not a candidate for transplants due to the nature of her underlying condition. She has entered palliative care as of February 2025.
In spite of it all, she has achieved amazing things in her life. She has ridden and driven horses, been a downhill skier, been a member of a rock climbing gym, participated in track and field, become a sculptor and strived to illustrate together with me. She has listened to many books through her hearing aids and through the soft voices of her parents (including all of Redwall, Dad even did all the voices).
Our Rallying Cry
Our call to action now is to be able to give Momo one last grand adventure. She may need her wheelchair more than ever, but she still has excitement, drive and purpose. We wish to foster this as long as she will, and we intend to fight alongside her for as long as she’s able, and so we would like to take Momo to Europe this summer. We would like to give her the grad trip she deserves.
Most of our plans center around France and the United Kingdom:
Momo would like to ride in a train sleeper car and have breakfast on the train.
Momo would like to go to Disney Paris and meet princesses and characters from her favourite films.
Momo would like to listen to a museum tour and touch some of the great sculptures.
Momo would like to feel the warmth of summer and smell all the cheese and bread (her favourite meals all involve cheese and carbs)
Momo would like to bring some friends along with her too.
Momo has shared her own thoughts on the End. She has expressed her desire to join Star Clan (Warrior Cats heaven) and look over us all, giving us guidance and putting challenges in our ways to make us stronger. She is going to pet Toby dog (her first dog) and get to meet her Grandma Shirley (my paternal grandmother) and tell her all the stories about her life. When she told me all these, I cried too. I know she’ll achieve all of these, and I want her to get there having achieved her dreams with us as well.
The Costs:
We have some savings that we had put aside for Momo in her old age, however, with the time being what it is, we are working to access that account now. Those funds are earmarked for her end of life care, comfort and peace, funerary expenses and her eventual internment. These funds may go a small way towards this travel and adventure, but any additional financial help would be welcome.
We have approached other charities, including Make-a-Wish, Starlight Foundation and Variety Children's Charity, but as our wish for travel is outside of the contiguous North America, it doesn't fall within their purview. We totally appreciate and respect those charities for their support and understand their limitations. Due to our diverse, disabled, and queer presenting family, we do not wish to visit the United States at this time.
Other Creative Wishes that Can Help:
For our creative friends, we will share any linework art, songs, voice messages, poems or stories verbally.
For the artistically inclined, her reference picture can be accessed here:
https://www.dropbox.com/scl/fi/b3wj.....1h2po&dl=0 - Momo's Reference on Dropbox
Momo is a double merle cardigan Corgi. She chose the double merle as an external reflection of her genetic disorder, and to share the dangers of double merle breeding in dogs with that gene. As most puppies have some form of sensory loss.
We recommend linework with hatching to represent colours as the embosser can raise those lines and make them clear to her exploring fingers. For songs, she is a fan of folk music like Joni Mitchell and John Denver, as well as poppy music like the Beatles. Her current listening is Chad Lawson, a modern pianist with soft and sad vibes. For stories, she loves tales of Animals and adventure. If Game of thrones had had the characters as anthro forms of their houses, she would have been even more enthralled.
Finally, any amount of words of comfort and support and any shares of this page will go a long way in bringing Momo to her Last Adventure. This point where we hope to tie up all her plot lines, give her a hero's adulation and let her know how beloved a creature she is to us, her community and her world. She may not be with us a long time, but the lives she has touched and the joy and thoughtfulness she has provoked will live with all of us forever.
Thank you for being with us
Shay/Rhari, and Forever the Mom of Momo.
https://gofund.me/db36cb08
Additional charities that have supported us and would welcome donations:
Blind Beginnings
Canadian Deaf Blind Association
Canuck Place Children's Hospice
BC Children's Hospital
Make a Wish Canada
Starlight Foundation Canada
Community Venture Society
Strive Living Society
---
Love you guys. <3
Very much going to be sharing this and keeping you all in my thoughts.
Yes, of COURSE we will donate, to bring about more beauty and joy into this world through the beauty and joy of your child. You and she are amazing, and REDWALL! YES! YES! We grew up on those books, with Pearls of Lutra being our first and favorite.
I will donate what I can and try to make some art for her as well
Absolutely donating, and gonna signal boost this where I can!
Thank you, from the bottom of my heart, for sharing her tale. I don't have anything financially to contribute, but I will send every ounce of space energy in my heart out to you both. I wish you both the best.
Enjoy every moment you have with her.
She's lucky to have a mother like you doing whatever you can.
I hope that this will help you. I am sorry for what is happening with your daughter. Thoughts and prayers *hugs you*
As someone with a daughter currently fighting brain cancer alongside her cerebral palsy, I feel a bit of what you must be going through, though certainly not everything. I wish there was more that could be done for you and your family. 🥺
I will help!
Best wishes from this raptor to you and your girl! Stay strong!
Really hope she has an amazing journey through Europe with you guys!
You mentioned Momo wanted to visit France, have a guided museum tour, and see Disney Paris. Having been familiar with the travel industry since my infancy, and living in Paris, I can help you with the travel arrangements for the French segment of your trip and, if I'm in the city when you'll be visiting, personally offer give you guys a tour around Paris and whichever museum she'd like to see (I'm a 'naturalised' English speaker, so there won't be an issue with accents getting in the way). I haven't been to Disney Paris in almost 20 years, but I do know locals in this community who are very familiar with and work/have worked there, and I'm sure they'd be happy to help you.
For the British side, I know plenty of lovely furs in the UK who'd be happy to help you with whatever you'd want to visit, so don't hesitate to enquire as well.
Do not hesitate to send me a message if any of the things I mentioned would help, I'd be more than happy to provide any assistance I can. Stay strong.
🫂
She's so damn brave, you are so damn brave, to not just survive with that, but thrive as much as possible.
... And it's kinda stupid, but makes me think of the Arrival movie...
No matter how long in advance you know it is coming, you are never fully ready. I know you've been the best you can be and Momo has had the best life she can have. All my love to you both and the family.