Hope for Oakley

I'm Kirsten, and I am the mother of two and to that beautiful little girl. You see, Oakley is a kind-hearted, sweet, and one of the most caring little girls you will ever meet. She is a little girl who loves school and has had to miss so much due to unexplainable illnesses.

Over the last 9 months, Oakley has had fevers reaching 105 degrees, migraines, localized pain (and headaches), abscesses in her mouth, stomachaches frequently along with vomiting, etc. She was diagnosed with DiGeorge Syndrome around the age of 4, which is a genetic disorder, focal epilepsy, T-cell Disorder (part of your white blood cells), she was recently diagnosed with Lymphopenia (another disorder involving white blood cells), Submucous Cleft Palate, etc. Since October of 2022, she has been out of Children’s hospital, the local emergency room once sometimes twice a week, and multiple doctors and Urgi-cares with no real answers to what is wrong. She is followed by Immunology, Neurology, Hematology, Audiology, Cleft/Craniofacial Clinic, etc at UPMC Children’s Hospital of Pittsburgh. Her most recent lab work has hit the danger zones. Oakley’s Lymphocytes, part of our white blood cells, have dropped below 1000, it was at 2300 little over a month ago. And now with the new symtoms like the mouth abscesses, enlarged lymph nodes, she need's a doctor who will see her sooner than every 6 months. Her little body cannot fight off viruses or infections like it should. I've been pushing and pushing for months for them to look into it more because something just does not sit right with me or her father. There are some days she will barely do anything, and end up incredibly weak and need to sleep the day away. Her little sister just wants to play again.

(Oakley on the right, her sister Taliah on the left 2 years ago)

Reason To Why We are Asking for Help

Children's Hospital is having trouble determining what is wrong with our little girl, so I took it upon myself to contact Mayo Clinic hoping that they would take on Oakley’s case. On May 16th, I got the phone call to schedule her appointment. We are to be there on June 20th, which is a little over a month away. Oakley and I (her mom) will be flying from PA to Rochester, Minnesota to meet with the Immunology, Infectious Disease, and the Rheumatology Clinics at Mayo in the Children's division. We were not expecting her to be seen in such a timely manner and did not have enough time to financially prepare for airfare and hotel accommodations. Her father, Andrew, will also have to take this time off work, unpaid, to stay at home and care for Oakley’s younger sister Taliah, and will not receive paid time off or vacation hours. Currently, I am a college student and stay at home mom of both girls so he is our sole provider of income. Getting our daughter better is the most important thing to us, she need's to be able to play and feel like a normal kid again.

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