Olive's Stem Cell Regenerative Therapy

Let me start with saying Hello...hello! Most people don't know the day to day life of sweet 4 year old Olive and I wanted to provide a look into her life and what the future holds. 

Allow me to introduce you to Olive Kennedy, the strongest and brightest light in the room and I’m proud to say that she is my niece. She is the warrior in our family. Olive was born on November 21st 2015 and it was the best day of my sister and her husbands life. It was the beginning of a new era for them as parents.

I was in the room for the birth and it was beautiful. So much love entered into the world that day and it has only continued to grow from there. We have all been there every step of the way from the first diagnosis to today. We have watched Olive endure endless testing, needles, surgery, anesthesia, losing the ability to stand, run, walk, crawl or even feed herself, loss of her verbal ability and more. It has been horrifying to watch her suffer but let me tell you this girl has tenacity. She has never lost her light or her smile and my sister is the strongest person I know. When the medical field throws her a hurdle, she jumps it — When the school system throws her a curveball, she hits it out of the park and when Olive needs her to be there, she is there 1,000,000%.  Olive is also Zoe's best friend, her first little cousin. Zoe will always protect her and has personally chosen to do school research and presentation projects on Olive and her epilepsy on a crusade to educate others. 

They have tried a variety of drugs and treatments and now they are looking towards modern medicine and are going to start stem cell rejuvenation for Olive. It is a series of 5+ treatments all taking place in Corpus Christi, TX by world renowned doctor and surgeon; Dr. Mohammed Emran who uses Regenerative Therapy to pursue the use of stem cells in helping people achieve better health. https://www.youtube.com/watch?v=B0prtxe7LW0#action=share  // https://www.regenestem.com/medical-staff/ The first of many trips to Texas is booked for mid-January and the cost is high-- roughly around $9k per trip. I am asking for the help here because I know my sister never would, but we all need every bit of support possible to give my niece the hope and help she needs. We are so grateful and know every bit helps.

I want to thank everyone for reading and if you are able to contribute, thank you. If you are not able to contribute we appreciate your well wishes. I mostly want to thank Olive for being so strong and for choosing our family. We love her more than anything and just want our girl to live the life she deserves. 

Thank you so much.
x
Dayna

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Below is a note I asked my sister Alexis for.  She doesn't publicly share the day to day life they live with Olive and it was very hard for her to write this note below and it was even harder for me to convince her that doing a GoFundMe was the right path, so we are grateful. Thank you again. 

Olive was smiling at 4 weeks old, sitting up on her own at 5 months old, saying mama and dada at 8 months old, and walking at 13 months of age.  We had nothing to worry about other than your typical first time parent fears. At 15 months Olive began to demonstrate unusual eye movement that alarmed me.  Trusting your mom gut it a real thing. The doctor reassured us that what appeared to be eye rolls was just her eye muscles adjusting. We trusted that gut and saw a neurologist. I mentioned the word seizures and he too assured us that that was NOT what was happening. We demanded an EEG and continued following that gut. Olive’s EEG showed that she was seizing almost every 12 seconds even when we could not see them. That was January 24th, 2017. Olive was diagnosed with Generalized Epilepsy and was immediately put on medication.  That would be the last time we would get to see the real Olive ever again. I wish we knew. Since that day Olive has failed every medication. Medication we HATE but have a toxic relationship with. You come back to each new prescription with HOPE that your daughter will gain life behind her eyes again and be able to live like the babies around her did. To have a childhood.  To play with toys. Keppra, Trileptol, Topomax, Onfi, CBD, Zonegran, Banzel, Epidiolex, detoxing-FAILED.

Since 2017 Olive has not responded to medication. This is called intractable epilepsy( a name given to those whose seizures cannot be controlled.) Her seizures have robbed her childhood from her and I’m not sure what’s worse, the side effects from the medicine or watching our daughter shake and fall lifeless to the floor with each seizure, as my husband and I over and over again whisper in her ear “ you’re ok, you’re ok” as our voice quivers and we question each time if this is it. Will this be the one that takes her? I feel like I am lying and failing her every time I tell her she is ok because I am scared to death myself. This happens 10-100 times in a 24 hour period. This is our normal. Since 2017 Olive has lost the ability to speak, she is non-ambulatory, and requires a drop vest with a handle on it as she is guided with an aide or her parents to move from one place to another. Her seizures went from small eye rolls, to head drops, to drop attacks which is where her muscle tone gives way with no warning and she drops to the floor unconscious, to now tonic clonic convulsions.

She has been diagnosed with Lennox Gastaut Syndrome. 1% of patients with Epilepsy have this rare syndrome. We took Olive for genetic testing and it came back negative for all genetic syndromes. More complexity. In February of 2019 Olive had surgery to have a VNS device implanted in her Vagus Nerve and chest. This device would provide us with more hope. 30% chance of it REDUCING seizures. 30 percent. I can’t remember the last time 30% sounded good to anyone, but for us there was a shred of hope in that 30% and we prayed for it. Since that surgery, Olive has had ups, downs, sickness, struggles and more battles than I care to recall. She has had moments of laughter and sheer joy. We live in the “good seconds” because we know they will not last.

Olive is 4 years old. Every birthday that passes, I pray that she will be able to open up a present. “Okay, maybe next year.” We’ve gotten used to it. I still take her little limp hands and put them on the wrapping paper, hand over hand and imagine she is opening them. During Christmas each year I pray that this will be the year she knows it’s Christmas. That she will notice the tree, the lights… the presents. I pray that I can buy her a toy out of the 6-18 month section. It is hard for me to explain all that I wish for because I know there is so much gratitude that comes along with this journey. To hear “mommy” or to be ran to or acknowledged when I walk in the door from work are things I dream of.

I think what hurts the most is that WE KNOW SHE IS IN THERE. She was fine. Her light is so bright behind those eyes. I just know it. My husband and I want to know that we DID EVERYTHING THAT WE COULD.

We discovered Stem Cell Rejuvenation Therapy. We are starting a new decade and a new year, 2020 we are taking Olive to receive one of many procedures that could very well help her to walk, talk, and use her arms and hands correctly again. We could hear her voice again. It’s not easy. It’s not affordable. It’s not guaranteed. But we are willing to do whatever it takes to know that we exhausted all options for Olive. We will be flying to Texas in January, the start of the new year to begin the first of many treatments that could very well change her future.