Pfeiffer Syndrome

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:

http://ghr.nlm.nih.gov/condition/pfeiffer-syndrome

http://www.ccakids.com/syndrome/pfeiffer.pdfn

Information about Crouzon Syndrome visit Jenny Woolsey site:

http://crouzonsyndromeaustralia.beep.com/crouzonsyndrome.htm

Jenny and her family are an inspiration.

To contact me personally or assist me in publishing my book please email:

danablackhall@yahoo.com

© Any information within this document can not be edited or distributed without my permission.

21 thoughts on “Pfeiffer Syndrome

  1. Thinking of u & family……god chose the right parents to help little Spencer grow into a well balanced adult. A long road ahead but I know u will be able sail through & take the good with the bad. Xxxx

  2. hi spencer you have a beautiful smile that lights up any room and brightens any dark days what amazing parents that you have that will stand by your side through every up and downs that you have remember god doesn’t give us anything we can’t handle he knows that your a tough little man God Bless You and Your Family

  3. You chose good parents before you came into this world. You are a handsom little man. The challenges you are sure to overcome will be the testament of your beauty. Thank you for teaching me and bestowing a moment of peace in me.

  4. Thank You for your willingness to share, your lives. I pray that GOD grants you HIS Grace — to overcome all obstacles, and continue granting you HIS Wisdom — every step of the way… –GOD Bless You :)!!!

  5. I’ve always believed that we go through life and have experiences for a reason. Perhaps to learn– so that when we return to our heavenly home, we will have competed our plan of life. Spencer, you and your parents are on this journey too…..and they love you just as you are and although I don’t know you, I love you too just because you’re you.

  6. I have been having trouble with my phone, so I am not sure my message got through. But I really am so glad that there are good parents like you in this world. I wish more parents understood the value and importance of their children as you do. And Spencer you are also someone who is truly a good person Your beautiful spirit shows in your eyes and your great smile. I realize that you all have a lot of things to deal with over the coming years. I don’t have anything that I can say to help. I just really wanted to say how truly amazing your family is

  7. Hello there handsome guy who is a gift from our good Lord you are a true blessing from God baby boy we all love you so so so much,

    • One can only hope that Spencer will do so many great things regardless of his start. Spencer is fortunate to have such great parents who want nothing bu the best in life for him. 🙂

  8. Spencer, you will have a long and wonderful life thanks to your loving parents and so many people able and willing to accept that we are not all the same.

  9. Hi Spencer You have a Beautiful Smile , It made me Smile when I saw how Happy You Are . Tell Mom & Dad Hello And have a Great Day Love & Kisses.
    Peggy

  10. My niece had these ops too. She has now finished school and grown into the most beautiful (inside and out) 21 year old young woman. My best wishes to you and your little one on your journey. The future is bright!

  11. Spencer is such a beautiful joyful little boy , he deserves the world , thinking of you and your family ..what your doing for your little boy is amazing 😃❤️❤️God love you little spencer .. Such a blessing to have write the comment for u darling, your mummy and daddy are doing an amazing job with you,, hope all goes smoothly in your future sweetly 😃

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