I am hoping you will support me in raising funds for my friend, Anne Ogunrinde and her precious almost 3 year old daughter, Penelope. I met Anne at a bakery in Pittsburgh. We started chatting and from that, a friendship began. Anne and her daughter are truly beautiful souls. They come here from Orlando several times a year because Penelope is a patient at Children's Hospital Pgh. A short, simplified version of her story: Penelope was born blind and has had two bilateral cornea transplants, 12 surgeries and countless medical visits she is here anywhere from a day to 8 weeks at a time several times a year. This will be a long journey for them. They have insurance but the copays are astronomical, not to mention, airline tickets, hotel stays and additional out of pocket expenses. Anne has never asked for help but I know she could use it. Will you help me raise money for Anne and her sweet Penelope Grace? Any help is greatly appreciated...hotel, airline points etc...
Please read more about her story:
Penelope was born on 11/19/2015. Immediately after birth, during the routine check up, the doctors realized that her corneas were cloudy and she did not give a red reflex that indicated vision present in a child. Four days after birth, Penelope was diagnosed with Peter’s Anomaly – a disease that affects the cornea of the eyes. My daughter was born with bilateral cornea opacity; essentially, SHE WAS BLIND!
Ten days after birth, we flew to the University of Pittsburgh medical center to meet with Dr Ken Nishal – a renowned surgeon who is one of the few in the world who performs cornea transplants in infants. After several evaluations, we were notified that Penelope was a candidate for the cornea transplant surgery. The surgery, while very risky with unforeseen complications was incredibly crucial to Penelope’s vision and global development.
At 2.5 months old, Penelope received a bilateral cornea transplant to help provide some vision. As a result of the transplant, Penelope developed glaucoma in both eyes which is currently being managed by a rigorous eye drop routine and she receives a daily dose of steroid to mitigate the cornea transplant rejection. This journey, we were told, is a possible 8-year marathon with several peaks and valleys.
Penelope is now 34 months; she has been in surgery more than 12 times and recently had her second bilateral cornea transplant. She has also had her lens removed in both eyes due to cataract and on the right eye, the surgeons also had to remove her iris due to the development of a membrane that had it stuck to the cornea. She is now on a more advance regime to help control her glaucoma.
Penelope’s eye anatomy and corneas are incredibly delicate. Her immune system is currently being suppressed to prevent her body from rejecting the corneas. She has never attended day care due to the risk of exposure to sick children as she does not have the immune defense system to fight any diseases. Additionally, given her frequent and sometimes unplanned surgical visits, keeping Penelope sickness free is incredibly important as each surgical intervention has helped prolong the life of any current cornea.
Today, Penelope is growing up to be a courageous child who is not limited by her vision. This advancement did not happen overnight. It requires consistent medical check-up and dedicated focus outside of clinical visits; administering all eye drops on time per the doctor’s prescription; attending all occupational and speech therapies; attending all early intervention therapies and vision development sessions; maintaining constant communication with her doctors and; continuing to educate myself through the Hadley school for the blind on how to raise a child with a vision impairment.
We were forewarned of the commitment involved if we were to embark on this journey. Nevertheless, to give my beautiful baby girl a chance at seeing how beautiful this world is and living to her full potential, is merely me fulfilling my job as a parent. I am incredibly proud to call Penelope my daughter and to be on this miraculous journey with her. I have full confidence in God that he is in control and his glory will shine brighter with every Blessing he bestows on my daughter.
Thanks so much!
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