Jordan's Journey for a Cure
Donation protected
This is Jordan
4 years ago Jordan was diagnosed with Giant Axonal Neuropathy. It is a very rare genetic condition with only 74 other kiddos in the world being effected as well. It is a terminal diagnosis resulting in her nervous system shutting down little by little. Over the past 4 years we have gone from Jordan walking with little assistance to now being fully wheelchair bound. It is so very difficult to watch your child's condition progress and worsen. Every set back is a new time of grieving.
We have been on an amazing journey to find a cure for Jordan. We have been to NIH (the National Institute of Health) and she was the 7th patient to receive Gene therapy, meaning she was injected with Trillions of new genes! We are hopeful that this treatment has slowed the progression of GAN as Jordan still has full capacity of her Lungs, eyes and upper body. However, sadly her lower body continues to progress and get worse.
This now brings me to our current need......
In October we had a doctor at Harvard reach out and tell us that he was sure Jordan's DNA (the portion mom gave her) was amendable by an ASO (Antisense oligonucleotides) A designer drug manufactured specifically for her that would trick her body into believing it knew what it should be doing. This is not a treatment for GAN but rather a treatment for Jordans DNA specifically! We were so excited, but the end of his email stated that he didn't have the resources nor the time to explore this..... Insert heart drop!
So whats a mom to do except ask every doctor, every rare foundation, EVERYONE if they know of anyone working on the ASO approach. Nothing......
Then, we are in hospital getting Jordan spinal surgery when we run into Jordan's neurologist and she says to us that there is a doctor here in Alberta in our city working on this!!!! This is amazing because if this works and Jordan will start receiving the injections they will be every 4 months for the rest of her life, and here is this doctor right in our backyard!!!
Now to the reason for needing this page. Every doctor that looks at Jordan's DNA sequencing agrees this will work, however before injecting anyone with a new drug we need to do In lab testing, where they will take Jordan's Fibroblast (skin biopsy) and introduce the drug, they will then know if it will work in the real world and make sure it will not harm her. This testing is costing us $32,500. They are ready to begin in May. We have less than 4 weeks to raise this money.
A Treatment for 1
1 little Girl
My little Girl
So please if you can help in anyway we greatly appreciate it, because without a cure, Jordan's future is unknown.
If you would like to help in other ways, we will be hosting a pub night June 8th in Edmonton, Silent auction items are welcomed as well as tickets are for sale. There is an account open at Royal Bank in Jordan's name, if you need the email to transfer directly please reach out and for our US friends and Family you can donate directly to Hannah's Hope Fund making sure to put "Jordan's Therapy Development" in the subject line/notes and you will be issued a tax receipt.
Again thank you for your time and your generosity, we have already been so overwhelmed with the response and the help.
4 years ago Jordan was diagnosed with Giant Axonal Neuropathy. It is a very rare genetic condition with only 74 other kiddos in the world being effected as well. It is a terminal diagnosis resulting in her nervous system shutting down little by little. Over the past 4 years we have gone from Jordan walking with little assistance to now being fully wheelchair bound. It is so very difficult to watch your child's condition progress and worsen. Every set back is a new time of grieving.
We have been on an amazing journey to find a cure for Jordan. We have been to NIH (the National Institute of Health) and she was the 7th patient to receive Gene therapy, meaning she was injected with Trillions of new genes! We are hopeful that this treatment has slowed the progression of GAN as Jordan still has full capacity of her Lungs, eyes and upper body. However, sadly her lower body continues to progress and get worse.
This now brings me to our current need......
In October we had a doctor at Harvard reach out and tell us that he was sure Jordan's DNA (the portion mom gave her) was amendable by an ASO (Antisense oligonucleotides) A designer drug manufactured specifically for her that would trick her body into believing it knew what it should be doing. This is not a treatment for GAN but rather a treatment for Jordans DNA specifically! We were so excited, but the end of his email stated that he didn't have the resources nor the time to explore this..... Insert heart drop!
So whats a mom to do except ask every doctor, every rare foundation, EVERYONE if they know of anyone working on the ASO approach. Nothing......
Then, we are in hospital getting Jordan spinal surgery when we run into Jordan's neurologist and she says to us that there is a doctor here in Alberta in our city working on this!!!! This is amazing because if this works and Jordan will start receiving the injections they will be every 4 months for the rest of her life, and here is this doctor right in our backyard!!!
Now to the reason for needing this page. Every doctor that looks at Jordan's DNA sequencing agrees this will work, however before injecting anyone with a new drug we need to do In lab testing, where they will take Jordan's Fibroblast (skin biopsy) and introduce the drug, they will then know if it will work in the real world and make sure it will not harm her. This testing is costing us $32,500. They are ready to begin in May. We have less than 4 weeks to raise this money.
A Treatment for 1
1 little Girl
My little Girl
So please if you can help in anyway we greatly appreciate it, because without a cure, Jordan's future is unknown.
If you would like to help in other ways, we will be hosting a pub night June 8th in Edmonton, Silent auction items are welcomed as well as tickets are for sale. There is an account open at Royal Bank in Jordan's name, if you need the email to transfer directly please reach out and for our US friends and Family you can donate directly to Hannah's Hope Fund making sure to put "Jordan's Therapy Development" in the subject line/notes and you will be issued a tax receipt.
Again thank you for your time and your generosity, we have already been so overwhelmed with the response and the help.
Organizer
Christa Atkinson Gagnon
Organizer
Edmonton, AB