Hello All

Some of you will know me, many of you won't, I haven't been on the boards for some months.

Those of you who do know me will know that we have been waiting for some tests to find out why our little girl (now 17 months) is not developing at the same pace as other little girls her age...

Well, after MONTHS of waiting the Paediatrician finally came back from long-term sick and the genetic results made it through, despite being LOST for a month at the hospital.  She came to our house to see us on Wednesday morning. 

Our little girl has been diagnosed with Rett Syndrome, a complex neurological disorder affecting mostly girls which leaves sufferers profoundly and multiply disabled.  We don't even know how long we have with her, could be 10 years, could be 50.  She is already beginning to regress and lose some of the skills she has learned, she has stopped talking and can no longer sit up on the floor.  My house is swamped with equipment already - chair, standing frame, bath chair, sleep support... You name it we have it!

But the good news is that we have all the right therapists coming to the house to see her already - PT, Occupational Therapist, Play Therapist.  Speech therapist is due any day, and we are waiting for Hydrotherapy and Music Therapy too.  So she is getting the best care.  I have been searching all round the internet for more information and apparently Retts girls are called "silent angels" - very true.  That is a comfort in a way, she is our special little silent angel.

I would appreciate any words of support or encouragement you have.  It is a very hard time for our family and the shock still hasn't really gone yet.  And if any of you know anyone with Rett Syndrome and can give me any advice it would of course be welcomed.

Oh, and by the way the knee is OK - as usual am waiting for our lovely NHS to deliver me another appoitment to see my OS as I haven't seen him yet since my surgery last October 

With love to you all

Faith xx

Oh Faith, I too  am speechless, I will keep your family in my prayers. God knew what he was doing when he placed that little angel in your family. You are a strong and wonderful mother.

Bless you
missy

Faith, words to say to you isn't easy, cause I don't know what to say. You and your family are in my thoughts. I have wondered how things are and were on my way to IM you but felt unsure though I didn't know if you still waited for the results.Though it's a heavy and tough position you are in right now, you must find some relief in that you know what causes this.Have you and your family been connected to any other families having kids with this syndrome ? This can be helpful for you in longterm. I know people often say the understand and they say I have gone through same things. But Faith I know that's not true. But if you have other families with same diagnose it's much easier because they know what you are going through cause they have been there or are there. Faith there are an organisation in UK: www.rettsyndrome.org.uk
Maybe you can find help there to support you and your family.
I'm so sorry but I don't have any family I know with this syndrome.
I hope you can get the best help for your daughter and for yourself and for everyone in your family.
Faith, you know where to find me if you need to talk.
I have worked with kids with special needs for several years, not small kids, I've worked with youths. And I love them all !! Should never ever want to change that.
Hugs to you and you family !!!

Nettan 

Faith,
  I am not going to say i am sorry to hear about your daughter, because she is an angel and she was sent to you for a reason.  Never look at this situtaion in a negitive way.  Easier said then done i know.  I have a 27 year old servely handicapped sister.  She has cerable palsy, can not walk talk or see, and her brain doesnt function beyond the 12 mounth old level.  She needs to hand fedd, picked up and she wears diapers.  She was born when my mother was only 5 mouthns pregrnant and wasnt expected to live through the night.  She is a fighter and her she is 27 years old, healthy and happy.  My parents take the best of care of her.  We also ahve the bath chair, the standing baord the wheelchair, the travel wheel chair...and on and on.  She goes to a specail adult program called  AHRC.  She was in a special BOCES program until she was 21.  My parents revolve every move they make around her and her needs.  Last year was there first vacation in 26 years. (since there honeymoon)  My other sister and I bought it for them.  MY sister and I pitch in whenever and however we can.  We also have home health aids who come and help my mother out. 
I have seen it first hand and know it is the hardest job you will ever have to do in your life, but it is also the most satisfying.  I see my parents are happy knowing she is happy.  She is an angel sent to watch over you and your family.  I can not imagine my life without Danielle.  She has made me at the age of 20, very strong, and understanding of others.  When i think my knee is so unbearable i look at Daniele, and think she is happy dispite all she can not do, why should i let this little bump get me down.
My parents found that talking to a therapist really got them through the first few years.  They used to go to group meetings with parents of other disabled children, and also speratly.  My mm said she would have never found the courage to do this without that support group.
If you ever need advice please ask.  I know my sister and your daughter have differtn disabilities, but me or my mom or dad will be glad to help you.  Keep smiling Faith, you ahve been given a beautiful little girl.
Lauren

Hi Faith

My thoughts are with you and your family.

The Knee-Geeks are here to listen when you need us 

Chocolately Hugs 

Beth x

Hi Faith,
Firstly can I just say it is lovely to have you back  and I am sending you all ((((((Hugs)))))) and a special squeezy big one for your little angel, god bless xxx. 

Treasure each and every moment and don't be afraid to ask for help when things get tough we are all here for support and if you need someone to sound off on please IM me.  I've been meaning to contact you Faith keep positive and please keep in touch.   luv and hugs  Jax xxx

Faith, I have been thinking about you, and will try to get out my peds books, and see if I can supply you with any info you have not already found. I imagine the best treatment is love, and I am sure that you fill her heart everyday, and live for the present, making lots of memories, and videos. Be sure to show those to her, as every child loves to see themselves in the "movies." Teresa

Hello All

Thank you so much for your kind words - it really does mean a lot.

Carole, Missy, Paulette, Shade, Emma, Sharon - thank you for your prayers
Beth - special thanks for the chocolatey hugs!
Teresa - we are finding that she loves the Fimbles - children's TV here in England.  Lots of bright colours and music.
Casey - She is starting speech therapy in May, I hope that they will teach her a way to communicate so that we can ease her frustration.
Teresa_S - luckily we ave bought a new video camera and are hoping to take lots of footage of her before she loses any more skills.
Lauren - thank you for the advice, I have been in touch with a support group this morning and am hoping to meet up with them soon.  There are 4 other girls in our area with this illness.  I have been onto the website that Nettan mailed me and have become a member.
Jax - e-mail me chick!!  I miss you!
Mummy Holly - your kind words brought tears to my eyes.  I know that with that kind of support I will be strong enough for her.  Thank you xx

Well, she is getting all the right therapies and all the love that we can give her so lets hope that's enough eh?

Thank you all once again for your love and support, Faith xx