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

Jackson | North Carolina

Meet Jackson and his family. His parents say that Jackson is pretty much like any other 3 year old, except he wears a backpack with his pump in it 24/7 and he takes multiple medications a day for his pulmonary hypertension.

He almost always has a smile on his face despite all that he has to go through. Jackson loves the normal boy things: Spiderman, superheros, monster trucks, tractors, and dinosaurs! One of his favorite things to do is play “punch, punch, punch” (play wrestling/boxing) with his daddy. His favorite cartoon is Tom & Jerry or Donald Duck, although he enjoys Mickey Mouse Clubhouse, Team Umizoomi and Bubble Guppies as well. He is adorable, joyful, loving, courageous, and inspiring.

Jackson was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) on August 21st, 2012 when he was 14 months old. Pulmonary hypertension is when the small arteries (blood vessels) of the lung become narrowed and pressure builds up in them. The right side of the heart pumps blood through the lungs, where it picks up oxygen. Then, the blood returns to the left side of the heart, where it is pumped to the whole body. The heart needs to work harder to force the blood through the vessels against this pressure. Over time, this causes the right side of the heart to become enlarged. IPAH is rare. Usually in children they are able to find a cause, such as a hole in the heart or another heart condition that causes the PH. In Jackson’s case they have yet to find a cause, so they are considering it IPAH.

In the words of his mother, “We love him to the moon and back. He is my hero.”

A special thank you to Casey Tarpy of Casey Rose Photography for donating her time and talent.

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Casey | Georgia

Meet Casey and his family. This 7-year-old beautiful boy’s favorite things are Playdoh, flash cards, bubbles, and blocks. Casey does therapeutic horseback riding which he loves! Casey absolutely loves watching music competition shows on TV such as the Voice and American Idol. He will watch the reruns over and over and even has Blake Shelton’s finger point down cold.

Sweet Casey has a lot of health challenges, which began very early on, including Mitochondrial Disease (Mitochondrial disease is life threatening and progressive in many cases), cerebral folate deficiency, 4q deletion (rare and genetic) syndrome, and SeSame syndrome.

Due to these conditions, Casey is developmentally delayed, has a moderate intellectual disability, and has autism. He has many health issues and has doctor appointments and therapies every week. His biggest health challenges are neurological and psychological. He fatigues easily as well. Casey attends a special needs program in school with two wonderful teachers!

His parents said, “Our dream for Casey is happiness. We don’t know how this disease and  genetic syndrome will affect Casey’s health as he gets older. We have been told it will most likely progress as he ages. Our goal is to keep Casey smiling and happy as much as we can and help him reach his highest potential.”

A very special thank you to Amy Jo of http://www.AmyJoPhotography.com for donating her time and talent.

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Amina | California

Meet Amina and her family! This 7-year-old little girl is kind and brave. Not to mention, funny! Her favorite colors are purple and pink. Amina loves to sing and take ballet classes. Spending time with her parents and loved ones is what makes her smile the most.

In March 2013, this sweetie pie started to show concerning symptoms. The first thing her family noticed is she would sleep more than usual; she was tired to the point that she even fell asleep at school once, which was very unusual. Amina also complained of leg pain.

After many, many tests and an ER visit, they discovered that her platelets were low; Amina had less than half of the normal count. Then, on March 12th, she was admitted and scheduled for a bone marrow biopsy. The results were unfathomable: Leukemia. Through the ups and downs, she remains strong and fierce, and she is her family’s inspiration.

Amina is currently in maintenance phase for the next year and a half.

Special notes about these photographs: Amina is ALWAYS taking selfies with her mom’s phone and her iPad. And in one photo she is literally punching, or “kicking Cancer’s rear.” You go girl!

A very special thank you to Tira Young of Tira J Photography for donating her time and talent to Amina.

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Dream | New York

Meet Dream and her family. “The Dreamster” is 10-years-old and was born with Sickle Cell Anemia. As so often happens with this condition, Dream has battled a host of complications including chronic pain stemming from diminished levels of oxygen in her cells, episodes of pain, and a stroke at five years old.

Despite her challenges, Dream’s determination, bravery and spirit never wanes, as evidenced by her active life as a student, Girl Scout, artist, and “hula hoop extraordinaire.”

Sickle Cell Disease, is a hereditary blood disorder which affects hemoglobin that can impact nearly every organ in the body. It brings on a host of severe health issues including the potential for acute life threatening complications of the lungs, brain, and immune system, as well as severe anemia. She underwent myeloabative stem cell transplant earlier this month. Her mother also went through an HLA-matching procedure that involved the extraction of her stem cells so that they may be transplanted into Dream.

In preparation for the transplant, Dream had to undergo chemotherapy and radiation. This collective experience has kept her out of school and the family anticipates a return in the fall of 2015.

Dream was named Grand Marshal of the 10th Annual Go the Distance Walk and Family Fun Day this year. She has been using her Grand Marshal status to show others how young people can be active and excel, even while battling chronic medical conditions.

A very special thank you to Nicole Taylor of http://www.nicoletaylorphoto.com for donating her time and talent to Dream and her family.

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Eliana | Pennsylvania

Meet 1-year-old Eliana and her family. She is spunky, curious and happy. This little girl loves to smile, wave and interact with people too. She likes making music and taking walks outdoors. And best of all, she loves her big sister Shira.

Eliana was diagnosed with a heart defect in utero. She was born six weeks early by emergency caesarean, and at two days old, underwent a heart cath procedure to open her pulmonary valve. While recovering in the NICU, she went into kidney failure. At one month old, Eliana had surgery to insert a catheter to allow her to have peritoneal dialysis. While in the NICU, Eliana was diagnosed with a rare syndrome, which is what caused her kidneys to fail.

After 101 days in the NICU, Eliana came home in October of last year. In the past year, she has had surgery to insert a G tube for feeding and surgery to remove her nonfunctioning kidneys, which were likely to grow tumors due to her syndrome.

Eliana continues on dialysis at home for twelve hours each night. She struggles with feeding, as many children with kidney disease do, and is tube fed. She is currently on nine medications and receives physical therapy, occupational therapy, and feeding therapy. The plan is for her to have a kidney transplant around age two.

Her mommy’s biggest wish for her is that she is the best Eliana that she can be.

Our deepest gratitude to Jessica Snider of http://www.jessicasniderphotography.com for donating her time and talent to Eliana and her family.

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