I had the absolute pleasure of speaking with the lovely Nikky from @thebrissymum on Instagram and her motherhood journey so far with her beautiful daughter Lily who was diagnosed with Nystagmus and Oculocutaneous albinism at 4 months old.
For any other mums who are going through a similar situation, have a read of the below or reach out if you ever want to talk. After volunteering with Make-A-Wish for nearly a decade, I have seen what illness can do to families and how hard it can be, but just know you are definitely not alone!
Nikky's Story
I am Nikky and i'm Mum to Lily who is 2.5 years old and we are From Brisbane. Lily was diagnosed with Nystagmus and Oculocutaneous albinism at around 4 months old. 2. What was your initial reaction to finding out that your little girl had Nystagmus and what helped you through it?
Gosh i think i just cried, i cried for days. Its sooo incredibly overwhelming when your getting told all this information and your trying to process it all but you don't fully understand. You also feel super guilty, Like its your fault. You feel guilty that you can't change it. Truly think it was probably the lowest point of my life. Even writing this, thinking back to that time i feel like i could cry. I spent hours reading up on Google. You expect the worst outcome and when we got that outcome it almost didn't feel real. 3. Were there things that other people did that assisted you through this time? I.e. what could someone do for someone else going through something similar?
We are super lucky, we have a really solid support network. Just having them be there for us, and listening to us even when we were not really making sense with what was going on. I couldn't imagine going through it without them. Also the teams who Look after Lily are Amazing and we are so grateful for the healthcare we have here in Australia.
I also joined some Facebook groups for both Nystagmus and Albinism, its nice to be able to connect with people in the same situation and people all around the world who actually have Nystagmus and Albinism and hearing their stories. I spent so much time on Google reading up, And it was super draining because everything i was reading just seemed so Negative. Joining the Facebook groups and hearing peoples real stories gives me soooo much hope for the future. I think its nice to know and be reassured that no matter what your going through and how lonely you may feel, you truly are never alone.
4. How do you manage everyday life on top of any challenges with her medical treatment?
So thankfully Lily doesn't require to much treatment or extra care at this stage. We get assistance with the NDIS and Vision Australia. Vision Australia are INCREDIBLE. We seriously could never thank them enough. Lily has fortnightly Speech Therapy and we are just working out how much Occupational Therapy she will need. We see our Team at the Children's Hospital every 6 months so Lily can get her eyes tested. Each visit Lily has needed a new prescription and she received her first pair of glasses at 11 months.
We have previously done Genetic testing but haven't done any more, we want Lily to be able to make that decision when she is older if she wishes to have more advanced testing done. No testing will change her diagnosis and there is no treatment/ Cure for Nystagmus or Albinism. But hey maybe in 10 years from now that will be a different story? You just never know medicine and technology is always advancing 5. What are some of the positive things that have come out of your journey?
I feel like so much positive has come out of this. I feel like it's really grounded me as a person. Things that used to bother me before don't anymore. Its defiantly bought us all closer together that's for sure It's made us super grateful; we are so lucky to have each other and we are so lucky to have our health care system. I feel like you can turn any negative situation into a positive one when you get into the right mindset which might take a while.
For some reason , Lily was given this extra challenge in life. I really feel like everything does happen for a reason. Through all of this, I have become so much stronger. Before all this i used to hate making a Doctor's appointment, now i have to put on my big girl pants and Support my daughter more than i could have imagined. I Know regardless of how poor Lilys vision may end up I know she will do great things in life. I know she won't ever let anything hold her back.
I also made my Instagram and have had so many parents around the world reach out to me after searching the hashtags and its truly been incredible to connect with them. We just take each appointment, and chapter as it comes. We keep an open mind. Nikky - The Brissy Mum
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