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Friday, June 2, 2017

"Prayers for Landon" Go Fund Me

I am currently raising money for my amazing 15 month old son, Landon. For those of you who don't know, Landon suffers from Dravet Syndrome which is a rare, catastrophic, lifelong, chronic form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. It affects 1:20,000 individuals. 80% of whom have a mutation in their SCN1A gene. 

Without proper medications and treatment, there is a higher risk for SUDEP (Sudden unexpected death in epilepsy). Common issues associated with Dravet include prolonged seizures, frequent seizures, behavioral and developmental delays, movement and balance issues, orthopedic conditions, growth and nutrition issues, sleeping difficulties, chronic infections, disruptions of the autonomic nervous system (which regulates body temperature and sweating), and many more. Landon is already showing signs of many of these issues associated with Dravet. 

We are looking to provide Landon with much needed funding for his medical care. Some of his current needs are a cooling vest in hopes he can play outside like a normal child. At this point Landon is experiencing issues regulating his body temperature, which involves seizures occurring within minutes of being outdoors. We also would like to provide Landon with a seizure alert service dog. This process alone takes a great amount of time, money, patience, etc. The service dog alone is anywhere from $10,000 - $17,000 but will be well worth it to help make sure our son is not another statistic to SUDEP. The funds will also be used to help us with travel expenses as they're all adding up. 

In Landon's 15 short months of life, he has spent countless days/nights at doctors appointments, ER visits, ambulance rides, lifeflight, and many overnight stays. Please help me raise the funds to get Landon the proper medications, equipment, and care. Also, feel free to join our Facebook page "Prayers for Landon" and keep him in your thoughts and prayers! Thank you so much for being there for our family! It means the world to us!! 

Follow this link to help our son: www.gofundme.com/fighting-landons-dravet-syndrome

Link to join "Prayers for Landon":

4 comments :

Anonymous said...

Go Visit the Assistance office. Children like your son with chronic health conditions can get MA even if they have other insurance. Your resources will not matter. Ther are ppl who make six figures who qualify for the program.

Anonymous said...

Yes I'm aware of these programs. A couple, who the Mother is a lawyer and the Dad is helicopter pilot/mechanic, away from here get tremendous help for their disabled child, maybe a different level of illness, but worth checking. They also get substantial respite care, so both are fully employed. It must be so hard to have a disabled child and any financial help would be a blessing for those who are eligible. Good luck, please give it a try, you have nothing to lose and much to gain.

Anonymous said...

Praying for little Brandon, such a cutie, will keep you in prayer to Jenn,

Anonymous said...

Jen, I've watched you grow from a girl, to a young lady, to a beautiful and Magnificent woman and now a Mother, this little guy is so very lucky to have YOU as his Mother, an LT as his Dad, and You both to have him. God chose the three of you for this Journey, You will ALL make this, Never forget the Love of All Your Family, But most of all have FAITH IN GOD, BE STRONG, and Keep those Smiles, and Love. You are in my thoughts and prayers daily, Please keep us posted as to things.