Here is a great article written by Marcello Di Cintio of Swerve. Features the work of Shirley Weyland of Calgary and story of Leif Erickson of Vancouver. Check it out!
A delightful young girl we have been honored to get to know was recently featured on KPLU 88.5 Radio in Seattle. Greta is such a sweet girl, listen to how her story intertwined with that of a young adult, Nina when they became roommates at Children’s Hospital in Seattle. Story by Gabriel Spitzer KPLU.
Some days we have the opportunity to watch something truly spectacular and healing occur when our patients meet each other. Today was one of those days. The devastation of retinoblastoma has the potential to tear a lot of people apart, today it brought two young ladies together in hope and friendship.
Ashlyn is a sweet 2 year old who came in today to get her first prosthesis. She has been a bit tentative of the whole process of trying on her prosthesis. Coincidentally, (if you believe in coincidence) Sydney a very sweet 16 year old came in to begin the process of a new prosthetic eye. Without any prompting, Sydney introduced herself and showed Ashlyn how easy it was for her to put in and take out her own prosthetic. Ashlyn’s cute little brown eye got so big and her heart grew so brave. She sat right down and did an amazing job of allowing us to install her prosthetic eye. She was so brave and so proud of herself. We are so proud of her and Sydney and their parents who were able to witness this very sweet and hopeful moment in time. Thank you Ashlyn and Sydney for warming all of our hearts today!
Scientists find gene linked to child blindness – A team of scientists, including researchers in Edinburgh, have identified genetic changes linked to coloboma, which affects around one in every 5,000 births.
A gene known as YAP1 was found not to be working in some patients, leading to the condition. The researchers hope the findings can lead to better diagnosis as well as treatments which may be able to reverse the problem.
Super Bowl starts in an hour. We can’t wait!!! We have definitely noticed an uptick in Seahawks fever around the region. Occasionally we put “tattoos” on the top of patients eyes, we have been doing a lot of Seahawk logos in the last couple weeks! Here is a sampling of the 12th man energy. GO HAWKS!!!
We couldn’t resist posting these beautiful photos from a patient who recently got married. She is such a stunning and beautiful bride. Love the bold colors and festivity!
Here is what the bride had to say:
“I wanted you to see your handy work in my wedding photos. No one could have ever known that I have a prosthetic eye. Because of you I felt so confident and beautiful on my wedding day.
Thank you thank you thank you!!!!!!!”
We are so happy to have found Specs for Little Heroes last year. We were so impressed with this organization that our office voted to support them this year. Many children have been blessed by the work of this organization – ensuring that children affected by retinoblastoma can receive and wear appropriate and well-fitting glasses to protect their eye(s).
Specs for Little Heroes was founded by Erin & Adam LaFleche after their son Justin was affected by retinoblastoma. They discovered the high cost of protective eyewear for kids and that insurance often will not cover this necessity.
Here is a great article written by the mother of one of our young patients. She is a true inspiration and a model to others for persevering and overcoming obstacles.
Here is a letter we received from ICAN, an organization that partners with parents and doctors of patients with anophthalmia and microphthalmia to better their lives. What a great project to aid these kids! ICAN can be reached at: http://www.anophthalmia.org.
I am writing to tell you about an exciting project that we are about to undertake which we believe will have great importance to children and families affected by anophthalmia or microphthalmia.
This project will investigate how children with visual impairment develop a sense of their own appearance and body image and what effect this has on their psychosocial development and well-being.
By learning how children with anophthalmia or microphthalmia think about their appearance, parents, caregivers, and educators can hopefully provide better support as these children mature and become more aware about their appearance and what options may realistically be available for improvement in this regard.
In an effort to develop this unique look into the needs of visually impaired children and their families, ICAN has offered to partner with a multidisciplinary team of specialists at The Children’s Hospital of Philadelphia, headed by James A. Katowitz MD, who has been involved in the care of many members of the ICAN family.
We believe that a better understanding of the visually impaired child’s concept of appearance is of critical importance for the psychosocial benefit of each child as well as for his or her entire family. This becomes even more complex given the changes in facial appearance associated with these disorders, whether one or both eyes have been affected. Significant improvement in appearance and of body image will likely help these children to function better in both their personal and professional lives.
We initially plan on working with children between the ages of 8 and 18 years and with at least one of their parents.
Any thoughts you may have will be most appreciated, whatever the age of your child, as your participation can be helpful in many ways.
Please respond to me by email within two weeks at: firstname.lastname@example.org
Tanya Bardakjian , M.S. C.G.C.
Certified Genetics Counselor
Albert Einstein Medical Center
“Eye Power Kids wear creates t-shirts to make patching and glasses fun for kids and adults! We want all kids to be proud to wear glasses and patches because they are all little super heroes. We created Eye Power Kids Wear because of our son Scott who was born with a congenital Cataract. He wears a contact, glasses and patches each day and we want him to grow up a happy little super hero proud of who he is.”
“There are so many kids out there that they hate to patch, and it’s a struggle everyday, and now they want to put on their patch in the morning because their patch gives them ‘superpowers.’”
Eye Power Kids Wear
We are so excited to share this great website with you. I saw my first patient come in 2 weeks ago wearing her eye power t-shirt, she was so brave and so excited! Here is an article about the work Jessica and her company are doing, desert news.