Asking people for help is not my strong suit; however, here goes nothing!
My best friend's daughter was born with a rare seizure disorder that has left her severely disabled. The seizure disorder is called Malignant Migrating Partial Seizure Disorder SCN2A mutation.
Ryan, Natallie's father, and Jess, Natallie's mother, are one of a kind parents. Ryan is a Police Officer and Jess is a stay at home mom (which is about 73 full time jobs) and she also helps out her sister babysit during most days.
Ryan and Jess already had two beautiful, healthy daughters and to make their family even bigger and brighter with Natallie was a dream come true.
Then, they found out after enduring months of pain and suffering, for both Natallie and them, that their 3rd daughter was going to be forever special needs. They were even told there was nothing they (doctors) could do anymore and she was not going to make it.
With all this said, all the tears, all the smiles, all the heartaches, they have not lost faith and have continued to fight to make everyday as best as they can.
This hits home for me because my sister, who was one grade above me in school, grew up with seizures. I can't tell you all the times I walked in on my sister getting tormented and teased because of her condition. It led to numerous fights, typically with a guy from the grade above me! I remember one time, I chased a guy down who was throwing rocks at her!
Knowing how some of this seizure stuff works for my partially disabled sister and how hard life is/was for her, and then to see Natallie have to struggle every day, being fully disabled, breaks my heart. Did you know, the Doctors said Natallie would NEVER make it to age 5? Well, her 5th Birthday is August 1st! You better believe Natallie, being the strongest little sweetheart I've ever met, is going to make 5!
With all this said, I am competing in a full Tough Mudder event on July 16th in the Twin Cities with a group of friends. Due to the amount of "extra" necessities that Jess and Ryan have to pay for on a monthly basis (medicine [one of which costed over a $1,000 per month with no insurance help], special things/equipment that make Natallie's life better, etc.) I would like to use my Tough Mudder run as a platform to hopefully raise money to help the family out. I know money isn't everything; but, it sure does help! I need everyone and anyone's help!
Here is an excerpt from Natallie's Facebook page (Prayers for Natallie):
Natallie is the youngest of three precious little girls that my husband Ryan and I have. Natallie was born on August 1st, 2012, and was the most perfect baby. She was named by her two older sisters Mackenzie and Brooklynn after they met her for the first time.
Natallie went home from the hospital as any other "typical" child would. We spent just a couple of days in the hospital and all baby screens came back normal.
At two weeks old Natallie started having spells of weird movements. After a couple of trips to the doctor it was suspected to be normal baby movements until the day that forever changed our lives...
September 11, 2012. Natallie was only 5 weeks old. This day is the day we learned those normal baby movements were actually seizures. I was holding Natallie in my arms as big sisters (Brooke 2yr and Kenzie 3yr) were napping when Natallie started to have her first grand mal seizure and stopped breathing. She turned blue, I called the Dr and the Doctor told me to get Natallie to the hospital as fast as I could. There was no time for checking in or waiting. I placed Nat in the hospital crib and off she went down the halls with 2 pediatric nurses. She barely made it through her CT scan where she continued to seize and drop oxygen levels into the 60%. As we ran Natallie back through the halls we passed the first room we were in breifly and went back to an ICU room where she was swept away by an pediatric Intensive care doctor who place her first breathing tube and put her into an induced coma. We ran every test possible and EEG continued to show seizures even with all the medicine.
With tests coming back and no answers and seizures only continuing to get worse Natallie was flown to Mayo Clinic in Rochester, MN.
After months of testing, endless hours of EEG, 7 induced comas, breathing tubes, MRI's, spinal taps, thousands and thousands of seizures and spending more time in hospitals than out, Natallie was diagonised with Milgnant Migrating Partial seizure disorder caused by SCN2a mutation. At the time of diagnosis she was the first ever with this exact mutation which was no help for treatment to stop the hundreds of seizures Nat was having daily.
(*We have since met other families that have SCN2a kiddos and have created a support group for each other!)
At 7 months old we almost lost Natallie. I still remember almost every detail of this day (4 years later). Two different Mayo PICU doctors came into Natallie's ICU room to tell me it was time to let her go. Stating that they had tried everything and there was nothing more they could do. I remember going into a small room with my husband and our parents and sharing this devastating news with them. We decided that we wanted a care conference to discuss our last options for Nat. At this time we asked all the questions a parent should never have to think about. We fought through our tears and developed a final plan. I also convinced the doctors that we had to give Natallie the best chance possible.
To give Nat the best chance possible her neurologist started a new Medicine that would be an added expense for us as a family but could also be the answer for her. A non FDA approved drug that insurance would not cover. We all just wanted the best chance for Natallie and decided we would figure out how to pay for it although it wouldn't be easy. After starting that medicine and giving Natallie a little breathing workout ,as it had been 7 weeks since she had taken a breath by herself, she was taken off the ventilator and shared one of the best smiles she has ever given us.
Life from that point on for our family is lived in the moment. No planning just making it through the bad days and holding on to any tiny glimmer of hope on the good days. During that care conference we were told Nat would never make it to her 5th birthday. Since then Ryan and I have decided to live everyday to the fullest and make sure we make as many family memories together, as tomorrow is never promised for any of us.
When you look at Natallie you might see a little girl who doesn't walk, hold her head, talk or eat through her mouth. A little girl who requires a lot of special equipment. A little girl that has bags upon bags hanging over her wheelchair, most of which have cords that are connected back to her. Also in those bags are machines that make crazy noises. A little girl who maybe looks a little different than you.
But when I look at Natallie I see the strongest little girl I have ever met. A little girl who has had to fight for her life and continues to win. A little girl who can tell you exactly what she is thinking by only using her eyes. A little girl who has the most contagious smile in the whole wide world. A little girl who can make you fall instantly in love with her without actually ever meeting her face to face. A world changer. A little girl who has taught me things about life that most people will never know or understand. And I can't forget to mention a little girl who is super stylish and can rock just about any type of headband!
This page was created to reach all of Natallie's prayer warriors. I believe in God, I believe in the power or prayer, I believe my prayers and your prayers are heard. Please continue to pray for our little Princess Natallie.
And a HUGE Thank you to all of you who have supported us through this adventure and those who continue to do so in prayer, well wishes and any other way. We are forever grateful for each and every one of you. #TeamNatallie