09 Sep Miss Fairy-tale Princess

Meet Athena-From Bothell, Washington

Miss Fairy Tale Princess

Athena was nominated for our Fairy Tale Princess photo shoot at Ruth and Kate Portraits by her grandmother.   We did the photoshoot at the Seattle Arboretum See her a touching video of her photography session below.

After her birth Athena was diagnosed with Hydranencephaly– “No brain, only brain stem”. The outcome for children with this disorder is still birth, or if by a miracle they survive birth, they would be a vegetable on a breathing tube and feeding tube for their short existence.

It was like being hit by lighting, only 1- 500,000 babies are diagnosed with this. The doctor told us that Amber could legally opt to induce herself early, knowing the baby wouldn’t survive. The doctor then had her meet with a grievance counselor. She had Amber hold a silicone baby, the size of an orange, and said, “This is the size of your baby currently. When you give birth to her this is how big she will be.”

Athena was born 3 weeks early Via C- Section at the University of Washington. The doctors warned her that she may be still born, or not breath once born. When the doctors pulled her out of Amber’s tummy, she cried instantly and peed on the doctors. She did not need any breathing assistance, which was a miracle on its own. When she was 1 day old, she was transferred to Children’s hospital, and had brain surgery at 3 days old to place her VP shunt.

Since Athena Birth, she has had spinal surgery, corrective eye surgery, and 2 seizures. She is delayed in her gross and fine motor skills, and uses a walker to walk. Regardless of her challenges, Athena is the happiest, loving and most sassy 5 year old you will meet. She has a photographic memory, remembering everyone’s name after meeting them once. She can recite her books, after having them read to her once. She knows her Alphabet, can count to 20, and can spell and read her name.

I could not be happier with her progress and I am so incredibly proud of the little girl she has become. I am thankful that Amber went against the doctor’s recommendation. This journey has made us all realize that doctors are not always right. The brain and the spirit is a magical thing. Prayer works, and having perseverance and faith, will always get you through a difficult time, allowing you to make decisions even when you don’t know the right answer. From this we always put it in God’s hands.

26 Jul Meet Blake R.

Meet Blake R- Maple Valley, Washington

Blake the Superhero

Blake is a happy 6 year old who is obsessed with sharks, superheroes and Star Wars. Upon first meeting him, you would never guess that he has a terminal rare disease. But on a closer look you would see that he has bruises all over his arms and legs, he gets tired quickly and is smaller than the rest of the kids his age. Just before age 2, Blake was diagnosed with a very rare genetic disease called Fanconi anemia, FA. Fanconi anemia is primarily a blood disease that may lead to bone marrow failure (aplastic anemia), leukemia, and/or solid tumors. FA can affect all systems of the body. FA patients are extremely likely to develop a variety of cancers and at a much earlier age than patients in the general population. Earlier this year, Blake was inpatient at Seattle Children’s Hospital for 40+ days for a bone marrow transplant. He endured 7 days of chemo and received new cells from an anonymous donor. This process wasn’t easy and Blake is still recovering, he will be in isolation until next year while his new immune system grows and strengthens. Through this whole process Blake has been so brave. He is a true superhero.