Spencer is diagnosed with Pfeiffer Syndrome type 1. This syndrome affects the sutures in the skull, otherwise called Craniosynostosis and the mid section of his face. His intellegence is normal and he will lead a forfilled life. Pfeiffer syndrome is a rare genetic condition that affects 1 in 100,00 babies. He will require a number of surgeries to fix his skull and make him look as “normal” as possible. These surgeries will take place over a number of years. Nothing his dad or I did gave him this syndrome is was done early stages of conception and by a mutated chromosome.
The aim of this blog is to not only share what I am going through… but to encourage others to do the same, and to eventually produce a book… our babies may be different but you know what thats just how it is and they have the right to know about thier lives and the opportunities regardless the difference.. I dont want to look back and realise I have wasted so much time wishing it didnt happen… our children are our children.. we love them from birth and throughout thier lives. and really this is all history that our great great great great grandkids will look on.. that makes me happy. xxx
Please write your experiences down, its an adventure… take in every moment.. our babies are still here, for that we must be grateful
We plan to teach Spencer how to be resilliant to judgment and maintain a smile on his face throughout whatever obstacles he has to endure.
We are grateful for the mildness of Spencers condition but we dont take for granted what could be in years to come.
We can only do one thing for Spencer and that is to simply love him.
Please follow our story by clicking on the blog links on the bottom of this page.
For more info about Pfeiffer Syndrome visit any of these sites:
Information about Crouzon Syndrome visit Jenny Woolsey site:
Jenny and her family are an inspiration.
To contact me personally or assist me in publishing my book please email:
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