|On the 24th March, 2016 at 8:14am we welcomed our beautiful baby boy Teddy into the world. He was amazing and everything that we could have dreamed of. The doctor came to check Teddy over and found that he didn’t appear to have red eye. After getting a second opinion from his senior, she also confirmed that she couldn’t detect red eye.
Teddy was referred to ophthalmology the following day and at just 28 hours old he underwent a series of eye examinations by a paediatric ophthalmologist. Teddy’s ophthalmologist discovered that Teddy had bilateral retinal dysplasia due to his retinas not developing properly. He explained this situation clearly to us and we booked an appointment to see him the following week to go through our situation in more detail.
Teddy was prescribed dilating eyedrops and at the following appointment we were told that there was nothing they could do for Teddy’s vision and we would be sent an appointment to see a senior paediatric ophthalmologist in Leeds for a second opinion.
A few weeks passed and we attended the appointment in Leeds where Teddy’s condition was confirmed as bilateral retinal dysplasia. The pressure in Teddy’s right eye had begun to rise and after a number of eyedrops failing to bring the pressure down it was advised that Teddy should have cyclodiode laser treatment to get Teddy’s glaucoma under control.
Teddy had his first treatment at 10 weeks old and required the procedure three more times. We were then given the good news that the pressure in Teddy’s right eye was stable. During the following few weeks the pressure in Teddy’s left eye began to rise and he required cyclodiode laser treatment in the left eye, too. The pressure in Teddy’s left eye rose much higher (into the late 40s). He required the procedure seven times in the left eye and was prescribed a variety of eyedrops, totalling 9 drops a day.
When Teddy was 9 months old we attended an appointment with a geneticist where we were told that Teddy has Norrie disease. This was a total shock to us as there is no history in our family. We were given lots of information about the condition and went away to digest the news.
We are now 10 months into our life with Teddy and our Norrie journey. Teddy is still the beautiful baby that we welcomed into the world and we couldn’t be more proud of him. He surprises us every single day with the milestones he meets and the determination that he shows us. Teddy is sitting strongly and has learnt to clap and wave like his peers. He is a happy baby and very strong willed. Teddy makes us laugh everyday and we wouldn’t change a thing about him.
Teddy’s condition initially upset us as a family but seeing how he is now and knowing he knows no different makes us realise everything is fine. Teddy is a happy little boy and needs positivity and encouragement surrounding him. We know Teddy’s life will throw many obstacles our way but we live for the day and will adapt as Teddy’s needs change.
At present Teddy is a happy little boy that is keeping up with his peers well and is also free of eyedrops with stable eye pressure.
If I can make him half as proud of me as I am of him then I know I will have done my best as a mother.
The Norrie Disease Foundation is developing information materials for medical professionals who may be unaware of Norrie disease and for parents of newly diagnosed children.
Well done to the Thunderbolts for raising an amazing £436 at last night’s gig in Kelvedon, Essex!
What stars you are Ethan and Jasper Peacock.
The night was dedicated to Professor Maria Bitner-Glindzicz in memory of her incredible support to the Norrie community.
Do you want to run and raise funds for the Norrie Disease Foundation?
We have secured charity places at the 2019 Brighton and London marathons and the Bath Half marathon. All are iconic events on the running calendar which sell out every year.
100% of funds raised will go towards a Family Fun Day to provide a safe and fun environment and peer support for all members of the family affected by Norrie disease. All runners will receive a NDF running vest, and support and advice on training and raising sponsorship.
Contact firstname.lastname@example.org for information.
Please note the deadlines to apply for places:
- London Marathon – Friday 19th October 2018
- Bath Half marathon – Friday 18th January 2019
- Brighton Marathon – Friday 1 February 2019
Do you already have a place at an event and wish to join Team NDF? Please get in touch with Kelly
A massive thank you to Livi and Sienna at John Ball School and all their amazingly supportive friends and families for holding a badminton charity fundraiser yesterday raising an incredible £250 for the Norrie Disease Foundation.
Thank you so much. We are so lucky to be surrounded by such wonderful people.
Well done to Jenni Lieu from Baby Steps Fitness www.babystepsfitness.co.uk and Esther Trewinnard from Thula Mama www.thulamama.co.uk and to all the Mums and Dads and children who raised an incredible £700 through a fitness Fundraising Bootcamp and a Fitness and Music session in Manor House Gardens.
A huge thank you to everyone who took part and to all those who couldn’t make it but still donated.