Support for Lennox Gee & Family
Donation protected
August 2019 - Lennox was diagnosed with ALD (adrenoleukodystrophy) and this fundraiser has been created to support him as well as provide provisions to Sean & Brooke as they navigate everything that surrounds this diagnosis.
X-Linked Adrenoleukodystrophy is a genetic disorder that occurs primarily in males. It mainly affects the nervous system and the adrenal glands. In this disorder, the fatty covering (myelin) that insulates nerves in the brain and spinal cord is prone to deterioration (demyelination) which reduced the ability of the nerves to relay information to the brain. The rate at which this disorder progresses is variable but can be extremely rapid, often leading to total disability within a few years. The life expectancy of individuals with this type depends on the severity of the signs and symptoms and how quickly the disorder progresses.
Update: 3-13-2020
This is probably going to be our last update. Lennox does not have much time and we want to spend these last moments with him loving on him and comforting him. We sincerely thank each and every one of you who have supported us during the last 6 months financially and with words of comfort and your prayers. We are so grateful for how you have all blessed us. Thank you so much.
Sean & Brooke
Update 2-18-2020
Brooke and I just want to again, say thank you, for your continued support and sharing this Go Fund Me. Lennox's symptoms continue to progress rapidly. He is now unable to stand or walk. It's hard to leave our home due to him being uncomfortable. He has lost much of his speech and most of the time we are still able to communicate with him to figure out his wants and needs. His laughter is still a delight! We have met with a social worker who as of this past week has helped us to start hospice. This will give us additional help in our home. Thank you so much for everything you have done to help Lennox and our family. We are so grateful.
Sean & Brooke
Update 12-16-19
Brooke and I want to thank you for supporting our family, especially Lennox, by sharing the Go Fund Me link, making donations, and for your well wishes and prayers. For those who were able to attend the fundraisers, thank you so much.
On December 12, we went back to Devos in Grand Rapids for a check up and the doctors said that the ALD is progressing. Lennox is now showing signs of spasticity and ataxia (his muscles are tightening and his reflexes are changing) as well as more vision loss.
There are no words to tell you how sincerely grateful we are for your continued support. Please know that we have much appreciation for each of you. We will continue to update you as we are able. Thank you again.
-Sean and Brooke
10-26-2019
After traveling to the Mayo Clinic in Minneapolis and meeting with one of the top doctors in the country for ALD, we were informed that Lennox does not qualify for treatment (bone marrow transplant or gene therapy) as he has progressed too far. The future for us all is unknown and at this time we will be taking leaves from work to spend our moments that we have with him as a family and preparing for the future of the disease.
Below is a link to the news report that recently aired. Please feel free to watch the video and share the link to share Lennox's story to create awareness. We can not thank everyone enough who have reached out in support of the Go Fund Me page and the fundraisers that have been organized for our family. We are blessed to have such wonderful family, friends, and community.
https://www.9and10news.com/2019/10/25/petoskey-child-diagnosed-with-rare-disease-lennox-gee-and-family-raising-awareness-for-adrenoleukodystrophy/?fbclid=IwAR2G_rlDari3KKfxEr1ANqvE14_Idbcey8OLJ1whEqzqpY4s3SPVggyBnv8
X-Linked Adrenoleukodystrophy is a genetic disorder that occurs primarily in males. It mainly affects the nervous system and the adrenal glands. In this disorder, the fatty covering (myelin) that insulates nerves in the brain and spinal cord is prone to deterioration (demyelination) which reduced the ability of the nerves to relay information to the brain. The rate at which this disorder progresses is variable but can be extremely rapid, often leading to total disability within a few years. The life expectancy of individuals with this type depends on the severity of the signs and symptoms and how quickly the disorder progresses.
Update: 3-13-2020
This is probably going to be our last update. Lennox does not have much time and we want to spend these last moments with him loving on him and comforting him. We sincerely thank each and every one of you who have supported us during the last 6 months financially and with words of comfort and your prayers. We are so grateful for how you have all blessed us. Thank you so much.
Sean & Brooke
Update 2-18-2020
Brooke and I just want to again, say thank you, for your continued support and sharing this Go Fund Me. Lennox's symptoms continue to progress rapidly. He is now unable to stand or walk. It's hard to leave our home due to him being uncomfortable. He has lost much of his speech and most of the time we are still able to communicate with him to figure out his wants and needs. His laughter is still a delight! We have met with a social worker who as of this past week has helped us to start hospice. This will give us additional help in our home. Thank you so much for everything you have done to help Lennox and our family. We are so grateful.
Sean & Brooke
Update 12-16-19
Brooke and I want to thank you for supporting our family, especially Lennox, by sharing the Go Fund Me link, making donations, and for your well wishes and prayers. For those who were able to attend the fundraisers, thank you so much.
On December 12, we went back to Devos in Grand Rapids for a check up and the doctors said that the ALD is progressing. Lennox is now showing signs of spasticity and ataxia (his muscles are tightening and his reflexes are changing) as well as more vision loss.
There are no words to tell you how sincerely grateful we are for your continued support. Please know that we have much appreciation for each of you. We will continue to update you as we are able. Thank you again.
-Sean and Brooke
10-26-2019
After traveling to the Mayo Clinic in Minneapolis and meeting with one of the top doctors in the country for ALD, we were informed that Lennox does not qualify for treatment (bone marrow transplant or gene therapy) as he has progressed too far. The future for us all is unknown and at this time we will be taking leaves from work to spend our moments that we have with him as a family and preparing for the future of the disease.
Below is a link to the news report that recently aired. Please feel free to watch the video and share the link to share Lennox's story to create awareness. We can not thank everyone enough who have reached out in support of the Go Fund Me page and the fundraisers that have been organized for our family. We are blessed to have such wonderful family, friends, and community.
https://www.9and10news.com/2019/10/25/petoskey-child-diagnosed-with-rare-disease-lennox-gee-and-family-raising-awareness-for-adrenoleukodystrophy/?fbclid=IwAR2G_rlDari3KKfxEr1ANqvE14_Idbcey8OLJ1whEqzqpY4s3SPVggyBnv8
Organizer and beneficiary
Lori Cooke Gee
Organizer
Petoskey, MI
Sean Gee
Beneficiary