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Cameron Kisiel-Haug
Donation protected
Cameron has been diagnosed with Leigh Syndrome, a devastating and life-limiting illness. Cam's diagnosis, specifically, is Mitochondrial DNA-Associated Leigh Syndrome and NARP.
Cameron and the family frequently travel to the Children's Hospital at the University of Michigan for continued care, and the team there has been amazing. We have set up this GoFundMe to help cover current and upcoming expenses, including hospital, medical, and pharmaceutical bills, travel, and all travel-associated costs for trips to Michigan with Cam, medical support at home, and ways to celebrate Cam.
These donations also help make up for lost income as his parents figure out ways to maximize time with Cam for as long as possible.
It also helps to cover the cost of his feedings and medicine. Cameron is on a feeding tube and gets all of his nutrition from that. Since there is no cure for this disease, Cam's best defense is a balance of nutrients and vitamins through his feeding tube. Val and Rick have to go to the pharmacy almost daily at this point since most pharmacies don't regularly carry what Cam needs.
Thank you to every single person who has shared this fundraiser, donated money, or reached out to help in many other ways. We appreciate it more than you know.
To learn more about Mitochondrial DNA-Associated Leigh Syndrome and NARP, visit: https://www.ncbi.nlm.nih.gov/books/NBK1173/
To leave prayers or well wishes for the family, or to learn other ways to help, please visit our Caring Bridge site at https://www.caringbridge.org/visit/cameronkh
If you have questions, thoughts, or concerns, please reach out to the "Cam Team."
Let's let Cam have the full time and attention with his family.
Cam Team Initial Contacts can be found at the Caring Bridge site.
WAYS TO HELP
1 - Donate on GoFundMe at https://www.gofundme.com/f/cameron-kisielhaug
Help cover current and upcoming expenses, including hospital, medical, and pharmaceutical bills, travel, and all travel-associated costs for trips to Michigan with Cam, medical support at home, and ways to celebrate Cam.
2 - Keep Cam and his family healthy.
One of the most important and easiest things you can do is to avoid Cameron or his caregivers if you're sick. Any mild cold is overwhelming for Cameron's system with this illness. Please do not visit if you're sick or feeling unwell. If you are visiting, always wash your hands, use hand sanitizer frequently, avoid kissing, and stay away if you aren't 100% sure you are well. It also will never hurt to wear a mask if you are close to him.
3 - Sign up for meal drop-offs - local only.
Email Ginny to be added to the email chain for meal drop-off. Email can be found on Caring Bridge.
4 - Postcards for Cordi!
Cordi needs some extra special love at this time too. Whether you travel or just stop in your local pharmacy or gift shop, postcards from everywhere and anywhere could brighten her day and make her feel special. She will love them. And as Cordi would say, "I can do that now. I'm 4, you know." Ask Ginny or Sam for Cordi's address if you do not have it.
5 - Purchase a door dash gift card and send to Ricky.
Long nights make for hungry bellies. And let's be honest, hospital food isn't great (ever) or on repeat.
6 - Thoughts and Prayers.
These go a long way in creating and maintaining positive energy for Cam and his family. You can visit the "well wishes" tab in the purple bar at the top to sign his digital card and leave a personalized message. Or you can reach out to Ginny to receive a picture prayer card.
7 - Time.
We know everyone can't give money, so donate some time.
There is no shortage of administrative tasks you can help with, whether you're near or far. Contact Ginny or Sam to help with something on the list.
LEARN MORE
To learn more about Mitochondrial DNA-Associated Leigh Syndrome and NARP, visit: https://www.ncbi.nlm.nih.gov/books/NBK1173/
- United Mitochondrial Disease Foundation www.umdf.org (http://www.umdf.org/)
- Mito Action www.mitoaction.org (http://www.mitoaction.org/)
- Cure Mito www.curemito.org (http://www.curemito.org/)
- www.aboutleighsyndrome.com (http://www.aboutleighsyndrome.com/)
Fundraising team (2)
Samantha Clink
Organizer
Lancaster, NY
Valeri Kisiel-Haug
Beneficiary
Virginia Stever
Team member