Bram was born with TEF (Tracheal Esophageal Fistula) which means his esophagus was not attached to his stomach. The condition was not known until Bram was born but was detected right away.
Within 24 hours he was in surgery to attach his esophagus to his stomach. The surgery was a success. They also installed a G-Tube while they were in there just in case.
Laith and his twin brother were born September 2021 at 30 weeks gestation. Laith suffered a brain hemorrhage which went unnoticed for nearly 8 months.
When he finally got an MRI of his brain it showed periventricular leukomalacia (PVL). PVL is an incurable injury which affects the white matter of the brain.
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Maia was born in January of 2023. Four days after she was born, we got a voice-mail saying that her newborn screen came back abnormal.
Within two weeks Maia was diagnosed with Spinal Muscular Atrophy Type 1 (SMA). SMA is a genetic degenerative muscular disease which causes the progressive loss of the ability to move, eat, and breath.
Brynlee was a happy, healthy 9 year old girl, loving life as a 3rd grader. In late March of 2023, we noticed her eating habits changing. She was passing up her favorite foods.
They did tests, hooked her up to an I.V., and found out that she was in severe Diabetic Ketoacidosis, which can be deadly. They began treating her at the local hospital and immediately arranged to fly her and mom to Diamond Children’s Hospital in Tucson.
Ella is a sweet three year old who, with her twin brother, completed our family in July 2019. Ella was born with a rare genetic disorder, chromosome 3p deletion. Since there’s not much known, we still have a lot to learn about this disorder.
Ella lived in the NICU at Phoenix Children’s for the first month of her life. She had her first surgery at two days old for choanal atresia.
Oscar was born with Caudal Regression. In Oscar case it affected his walking and being able to sit upright. He was 3 days old when he got his first set of casts.
He has had 4 sets since then. They were to make his legs straight and now in a sitting position so he can sit on his wheelchair. He has had 2 surgeries and has a surgery coming in May.
Mia is a happy and active 6 year old girl. When Mia was about 4 years old we noticed something odd about the shape of her mouth. It took many doctor visits, but we finally got an answer from Phoenix Children’s dermatology.
Mia has a rare condition called Parry Romberg Syndrome. There is no explanation for the cause of it, nor is there a cure.
Dustin started to suffer from frequent extreme stomach cramps, nausea and rashes leading to many doctors’ visits with a lot of different explanations such as COVID, flues, viral infections, a hernia and even food allergies.
On Sept 21 we found out Dustin
has serotonin carcinoid syndrome. We are currently going through extensive testing and scans to locate any tumors to treat with radiation.
In early April of 2017 we learned at a routine O.B. appointment that our 2nd baby girl- whom we had already decided to name Addelyn- had developed enlarged ventricles with excess cerebral spinal fluid in the brain.
Marcus age 13 was diagnosed with rhabdomyosarcoma. The way we found out; Marcus was playing in the All Stars Soccer Tournament January 15 2023 in Tucson. That night he came to us saying that he couldn’t urinate.
We took him to the emergency room in Tucson were they ruled it out as a UTI. With in three weeks later his urination discomfort continued and this time with blood in his urine.
Paige was first diagnosed with Neurofibromatosis (NF1) when she was 3 years old.
When she was born, her doctor mentioned the possibility that she may have NF1 based on the many brown spots all over her body.
Cayden is a 16-year-old who is a Sophomore at Thatcher High School. He enjoys hanging out with his friends, football and video games. Cayden was diagnosed with Hodgkin’s lymphoma In October.
He’s been coughing for several weeks nonstop and had a huge lump on his left side of his neck. The lump just continued to grow and no antibiotics were helping.
Jett was born on January 28th, 2008. He was such a sweet baby with a mild temper.
As he got older, we started to notice a weakness about him, so we ordered a genetic test. We were told that Jett had Duchenne Muscular Dystrophy (DMD).
Kason is a fun loving 12 yo who loves Roblox and sleepovers. His twitching started at 10 yo. His frustration showed as doctors and teachers weren’t seriously concerned.
He struggled making it to school as mornings are the worst time for his yet undiagnosed Juvenile Myoclonic Epilepsy..
Carson was your typical teenage boy who was involved in sports, he loved to hang out with his friends, pull pranks on others and have a great time, then in May of 2006 he was diagnosed with bone Cancer…
Aria will be 13 soon. She loves to swim, because floating in warm water is the only place she gets some relief from her daily pain.
Aria was born with every long bone in her body broken. By the time she was three, she had 150 breaks under her belt. Aria suffers from Brittle Bone Disease.
On June 6th Haileigh started to have stomach aches almost daily. They did blood work and noticed her white blood cell count was elevated and sent her to an emergency room.
Once at the ER they did more blood work and a CT scan of the abdomen and found numerous tumors.