Hi there everyone. My daughter is now 9 weeks old and she has been diagnosed with MGJW and Ptosis and that she may need surgery to correct it. Hearing this was heartbreaking, my husband and I couldn't believe this is happening to us and our little baby, we are so worried for her now with the operation and her future. This is all I can think about all day and I am trying my very best to stay positive. Hearing about other parents experiences on this forum really helped.
We live in the uk and she is being seen at moorfields eye hospital in london. We are waiting for a follow up appointment with the surgeon who will give us his recommendations on the best way forward.
The doctor that we saw said to prevent her loosing sight in her eye she will probably have to have an operation where her eye is permanently open and therefore she will never be able to blink again. My husband and I are not happy with this option and we would rather go down the route of fixing the ptosis and shortening the muscle. The doctors said that shortening the eyelid muscle will make the MGJW worse.
We are now waiting to discuss this further with the surgeon who will hopefully be able to give us more information and the best way forward.
Most of the posts on this site are from parents/people based in the USA and the Philadelphia hospital has been mentioned as one of the best place in the USA.
This condition is very rare but I was hoping to hear from parents of children based in the UK who have gone through ptosis/mgjw treatment in the UK, where they had the treatment and the outcome of the treatment. Please can someone get in touch my email address is email@example.com. Thank you.