Tiny Sparrow Foundation | A Non Profit Organization » A Picture of Hope

Jeremy | Florida

Meet Jeremy and his family.

Like any sweet 4-year-old boy, he loves cars & trucks, music, going to the beach, and his pet dog, Jerry.

Jeremy enjoys spending his time playing and getting into mischief with his baby brother, of course. He is happiest on the weekends when the family spends all of their time playing and enjoying time together.

This 4-year-old little boy is fighting bilateral Retinoblastoma. He is an inspirational and loving boy. Tiny Sparrow cheers on his courageous spirit and contagious smile for brighter days ahead!

A very special thank you to Kathy Izaguirre of http://www.browntography.com for donating her time and talent.

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Gavin | Pennsylvania

Meet 2-year-old Gavin and his loving family.

Gavin is a sweetheart — with a big personality but in a small package. He loves to be around people and be the center of attention. Although his bones are fragile, he is strong willed and is such an incredible fighter.

He loves spending time with and laughing at his big sister Ayla, who is is best friend. When he isn’t playing or watching his favorite show Mickey Mouse Clubhouse, Gavin loves being cuddled by his mommy, daddy, and sister.

Gavin has a rare genetic mutation called Type III Severe Osteogenesis Imperfecta (OI), otherwise known as brittle bone disease. Type III is severe, but manageable.

Although Gavin breaks bones easily, he the happiest little boy and is a blessing to those around him.

A very special thank you to Catara Carrell of http://www.cataracarrellphotography.com for donating her time and talent.

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Amy Cox

My son also has type III OI. Is this family members of the OI parents group, on Facebook? I’m in North Carolina, near Raleigh. You can pass my email along to them or tell them to look me up on Facebook. Email me if you need more info.
Thanks,
Amy

Gabe | Colorado

Meet Gabe and his beautiful family. Gave is a typical, silly 2-year-old. He enjoys singing songs, adores all types of animals, and loves reading books (especially books about animals!) He is a very animated kid and has even made up some of his own sign language.

His parents consider him a “miracle baby.” He was born with CDH (Congenital Diaphragmatic Hernia.) He had the fastest recovery from his surgery at 9 days old that doctors had seen in years and he only had a NICU stay of 40 days.

He was diagnosed with LCH (Langerhans Cell Histiocytosis, a rare Cancer) at 19 months old and started chemotherapy. Right now, it looks as though the chemo wiped out the LCH. However, his liver is badly scarred from the LCH and cannot recover. He is currently on the waiting list for a liver transplant.

His family shared, “He’s the strongest person we’ve ever met and has truly taught us what it really means to appreciate each day.”

Our deepest gratitude goes to Hillary Wheat of www.hwheatphotography.com for donating her time and talent.

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Bradley verhovec

Hi, I was sent this page by a friend my 20 month old son was just diagnosed with LCH 2 weeks ago and had his first chemo appointment this past Tuesday. I was wondering if you could give me any advice on what this journey entails for our family.

Tessa Cam (Gabe's mom)

Hi Bradley! I feel like I am very knowledgeable about LCH, the different types, and the different treatments and chemos. I will give a rundown on my son’s journey but feel free to email me with any questions.
My son had multisystem high risk LCH in his skin, ears, bone (mostly skull) and liver. He did 5 rounds of Clofarabine (the newest chemo sometimes used but not for all “types” of LCH.) He only did 5 rounds (5 months) and then had no evidence of disease. From what I’ve read and others I’ve talked to, 5 rounds is not much. His skin completely cleared after 1 round, his ears after 2 rounds, and his skull lesions never got bigger and started to decrease in size after 5 rounds. But, his liver was already too damaged and he needed a liver transplant. He received his liver transplant on July 9th and did amazing. Unfortunately though he very unexpectedly passed away on August 24th most likely from just a cold virus that got into his spinal fluid.
I have heard hundreds of stories of LCH survivors and most cases are not near as extreme as my son’s case. I’m sure your son will be a chsmpion 🙂 Please feel free to reach out to me. My prayers are with your family!

tessahougen@gmail.com

Alexa | Arizona

Meet Alexa and her family.

Alexa is 7-years-old—an intelligent, compassionate, beautiful and inquisitive little girl. She loves drawing and playing with her siblings. She loves to be outdoors and learn about life and creation, and mostly she enjoys just days spent at home with her family.

She battles Congenital Heart Disease (CHD) and has already endured three open-heart surgeries. Her family takes comfort and hope in learning from other wonderful and inspiring children and families with similar circumstances, as well as many highly skilled and devoted medical professionals.

Our deepest gratitude goes to Bri Holloway of  http://www.brihollowayphotography.com for donating her time and these positively gorgeous images of Alexa and her family.

http://tinysparrowfoundation.org/?p=4610

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Oakley | Michigan

Meet Oakley and his family.

Oakley is a 5-year-old little boy with a rare syndrome, Posterior Urethral Valves (PUV), a variant of Prune Belly Syndrome. He doesn’t let his disease confine nor define him. He is always smiling no matter what—shy at first—but warms up quickly. Oakley loves the Detroit Lions. His siblings make him smile the most, which is evident through these photos full of love!

At 20 weeks gestation, his family received news from the doctors that no mother should ever have to hear, “We see some very bad things going on with your baby’s kidneys and bladder. He might not take his first breath.”

Prune Belly Syndrome affects 1 in 40,000 babies. Most babies with this condition do not make it to their second birthday. The miracle baby whom no one thought would survive has lived against the odds and made a positive impact on so many people in his life.

Oakley has undergone several surgeries, and his progress has exceeded doctor’s expectations. Rather than dwelling on the things that Oakley may not be able to do, his family looks forward to all the things he will be able to do.

A very special thank you to Anne Jansen of  http://www.annejansenphotography.com for donating her time and talent.

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