We asked Crystal Smith, the amazing mom of Super Lorelei aka 'Kiwi', to tell us about her extraordinary TinySuperhero!
Tell us about some of the things that make Super Kiwi extraordinary!
She has been such a fighter since day one. The odds are always stacked against her, and when she gets knocked down she bounces right back. She never stops smiling and being her sweet self even though she goes through so much. She's the brightest sweetest little ray of sunshine and she amazes me every single day.
What are Kiwi's diagnoses?
Kiwi has many diagnoses. Two very rare genetic disorders Sotos Syndrome (a childhood overgrowth syndrome- 1 in 15,000 births) and Mitochondrial DNA Depletion Syndrome (She is missing 64% of her mitochondria.) MDDS is so rare we don't even have a number for it, and her variant is brand new. She also has epilepsy, autonomic dysfunction, among other things. She was also born at 31 weeks, and she's nonverbal.
How did you learn about Kiwi's diagnoses?
Kiwi was born at 31 weeks via emergency c section. She spent 9.5 weeks in the NICU. She was delayed, but we assumed it was due to being premature. At 7 months, we began noticing seizure-like activity, but it took months for confirmation. The week of her 1st birthday she saw a neurologist who diagnosed her with epilepsy and ordered genetic testing. Within a few months, she was diagnosed with Sotos Syndrome. From there, new diagnoses have popped up pretty frequently over the years.
Tell us about some of the most amazing moments in Kiwi's journey so far!
Kiwi has beaten all the odds since before her birth. She has baffled medical professionals all over the US, and she keeps everyone on their toes. Kiwi was born with Mitochondrial DNA Depletion Syndrome, and she is missing 64% of her mitochondria, which is significant. She has to fight so incredibly hard to meet any milestone and she’s had so many setbacks. Kiwi never gives up though. At 6 years old, she started walking unassisted short distances. We had no idea if or when this would happen...it is nothing short of a miracle!
What have been the scariest moments of Kiwi's journey so far?
Kiwi's birth was so scary. She was born via emergency c section at 31 weeks, weighing only 2lb 11oz. She spent 9.5 weeks in the NICU, fighting to make it home. She had a grand Mal seizure in her sleep at 7 months old, which I caught by some miracle in the middle of the night. We almost lost her that night, and as a mother, I don't think you ever fully recover from that fear.
Has Kiwi had any surgeries?
She has a port-a-cath for frequent blood draws and for the emergency fluids she needs when her mito condition causes her to crash. She has a g-tube as well.
Tell us about some challenges you have seen Kiwi overcome.
Sotos Syndrome can cause delays, so every milestone Kiwi meets, she has to work so much harder for. She was having up to 50 seizures a day at one point, though they're well controlled currently. Her mitochondrial condition is probably the hardest thing she deals with though. She is missing 64% of her mitochondria which means her little body just doesn't have the energy it needs and crashes pretty frequently. Usually a mito crash day just results in a ton of sleeping, but other times she needs to go to the hospital to keep her levels stable. It can be scary. It causes her to have a lot of weakness in her body which means frequent falling and injuries. Even with all of the many setbacks she has experienced and genetic disadvantages, she has been so determined to walk on her own and at 6 years old, she is doing it! She is taking control of her future one step at a time!
Are there any everyday things that are extra challenging for Kiwi?
She is fully nonverbal, so she's had to learn to communicate her wants, feelings and needs in other ways. She's a great communicator even without words. All physical activity is more difficult for her, but she's bound and determined to do what she wants.
When things are scary, what comforts Kiwi?
Snuggles with Mama and being sung to.
Does Kiwi have any sidekick siblings?
Big brother Aiden is 14. He has had to grow up quite quickly in many ways since Kiwi was born, which is a difficult reality for TSH siblings. He was with me in the NICU helping me take care of Kiwi, so he's always been involved. He worries about his little sister a lot. They have been through a lot together, and their bond definitely shows that. Aiden is such a sweet, protective, loving big brother to Kiwi.
What's ahead for your TinySuperhero?
Kiwi will be starting 1st grade this fall. She will be more mobile and independent than ever before and I'm both excited for her and scared to let her go. But I feel like she's telling me "mama, I'm ready" and as worried as I am, I have to listen. Gosh, it's hard though!
What is something you want people who meet Kiwi to know about her?
Kiwi is nonverbal, but that doesn't mean she doesn't have anything to say. She is hard to miss with her happy squeals, her little pink wheelchair/gait trainer, her curly red hair, and her tall stature. She loves it when people take the time to come speak to her. She can't use words to respond, but she will smile and make eye contact if you're really special! She regularly makes strangers smile wherever she goes, and she seems to love it. People are curious sometimes, especially children, and I am always happy to talk about my extraordinary girl.