Savannah is an adorable, sweet and happy two year old girl, who’s smile could melt anyone’s heart. She loves giving kisses and hugs almost as much as she loves following her brothers around.
On the outside Savannah looks like a typical toddler, but she is far from typical. At 11 weeks old Savannah had her first generalized tonic-clonic seizure. Within a few hours she had four more all of which required oxygen and rescue medications. This began her journey with epilepsy and our journey at helping her have the best chance at life.
After genetic testing Savannah was diagnosed with an extremely rare genetic disorder called SMC1A Epileptic Encephalopathy. She was only the 10th person diagnosed with this, and as of now there are only 15 documented cases of this disorder in the world. Unfortunately, we don’t know much about it other than it causes a catastrophic form of intractable epilepsy, moderate-severe developmental delay, absent/delayed speech, limited mobility skills and only effects girls.
From 11 weeks to about 11 months old, Savannah was admitted to the hospital for weeks at a time just about every one to two weeks mostly because of increased seizure activity. Before she was nine months old she had failed six seizure medications and the Ketogentic diet. She was also getting rescue medication three times a week. We started looking for other treatment options and that’s when we found cannabis oil.
Savannah started cannabis oil at nine and a half months old. Although she wasn’t completely seizure free, we were able to wean her off of four seizure medications. Savannah was averaging about one to three seizures a month for about eight months and her developmental progress flourished.
Among the several different medical issues that Savannah has, is recurrent kidney infections. In July of 2016 Savannah developed a kidney infection and was admitted to the hospital, like she always is for kidney infections. The next morning after Savannah was admitted she went into Status Epilepticus. After her seizure ended for some reason she stopped trying to breath on her own and her heart rate dropped dangerously low. She was then bagged and intubated. That infection threw Savannah’s seizures off for a month and a half. During that month and a half Savannah was admitted for increased seizure activity three times and then went seven months seizure free.
Since Savannah’s seizures are mostly while she sleeps and she requires oxygen and rescue medication for her seizures, I have always slept holding her. Sounds crazy to have to hold your child every night for two years while you sleep, but if I didn’t I wouldn’t have been woken up at three in the morning to her seizing. That seizure turned into two ambulance rides, a helicopter ride, Status Epilepticus four times, 14 days of continuous seizure clusters, requiring rescue medication several times a day and a 3 week hospital stay.
After several tests all coming back normal, we came to the conclusion that this random patch of seizures was to blame on her genetic disorder. Because of this Savannah desperately needs a Seizure Assistance Dog. A Seizure Assistance Dog would help give Savannah some of the independence typical children her age have. A Seizure Assistance Dog would allow her to finally have a big girl bed and give us the peace of mind to lay her down and know that a seizure won’t take her from us while we sleep.
Some Seizure Assistance Dogs can alert you minutes to hours before a seizure begins. This would allow Savannah to sit in the back of our van with her brothers, without me having to worry about throwing on her oxygen mask. Seizure Assistance Dogs are also trained to bring rescue medications and oxygen tanks. Savannah’s dog won’t only be trained to assist with seizures, but he/she will be trained to help with her mobility too and help comfort her during her endless hospital stays and doctors appointments.
Seizure Assistance Dogs are very expensive, due to the extensive training they require. It costs at least $40,000 to specially train a dog for Savannah. Families cover only a portion of that cost, a fee of $17,000. We are fundraising to help cover the fee required to provide Savannah with a life-changing service dog. Donations in support of Savannah should be made directly to 4 Paws for Ability – be sure to write Savannah Leisure on the memo line. Mail checks to:
4 Paws for Ability
In Honor of Savannah Lewis
253 Dayton Ave.
Xenia, Ohio, 45385.
If you wish to make an online donation, the website is www.4pawsforability.org/donate-now . Include Savannah’s name in the “instructions to merchant” through PayPal. You may also call to make a credit card donation over the phone at (937) 374-0385 – Monday thru Friday 9AM to 4PM EST.
Please help us make this possible for our Warrior Princess.
Thank you for visiting my fundraising page!