Mortality statistics

Update of statistics, ummm, not great! http://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related

Accidents

Accidents to Children

 
 Accidental injuries are a major health problem throughout the United Kingdom. They are the most common cause of death in children over one year of age. Every year they leave many thousands permanently disabled or disfigured.

 More than one million children under the age of 15 experience accidents in and around the home every year, for which they are taken to accident and emergency units. Many more are treated by GPs and by parents and carers.

 Those most at risk from a home accident are the 0-4 years age group. Falls account for the majority of non-fatal accidents. Most of these accidents are preventable through increased awareness, improvements in the home environment and greater product safety.

(ROSPA)  C:\Users\kerry\Documents\Accidents to Children Child Safety Advice & Information Home Safety RoSPA.htm

Start raising funds

Start raising funds today. Register your charity, big or small. Its simple every time you search using the search bar ...you raise money, it all adds up, then you get sent a cheque
 
http://www.easyfundraising.org.uk/referral/40011

AOS and MAP

  Often people contact me from all over the World sending Daisy and our family words of positive support. Theses words general reach us when I'm at breaking point or when Daisy has had a Low/Slump in her Health. 

 On days everything is going great, smoothly, then, before you get a chance to realise its all going so good .... a change of path kicks in.

   This, For over 2 years has become our Families most common barely functional  routine -

 Few weeks up ~ few weeks down ~ Who knows ?? 

 Eye infections, Apnoea attacks, febrile convulsions, chicken pox, septicaemia, infections of the blood, random skin infections , medications, MRIs, CAT scans, Specialists, specialist hospitals, we just never know and are never prepared for tomorrow. 

  This is where my sense of spontaneity's ,  lack of forward planning, great UNorganisation, and ability to go days without personal care or knowledge of where I'm sleeping, eating even going too next comes in! 

  Its a real bonus being able to carry my life in a small bag filled with Daisy's paper work, telephone numbers and continue to function in a normal is normal gets manner.  Its MOTHER F****** auto pilot.

 As I grew up, I always envied Mum more and more with the way she regularly juggled life so well. 

                OMG! WTF! LMFAO!                                         Fucking

Get the MAP  out ~ MOTHER^AUTO PILOT ! 

I'm on the MAP, PAM (My mums name is Pamela)

Note to oneself-

 Never visit my mum for sympathy you'd get 'Oh well' or just 'ooo'     - There is was No long conclusions, evaluations or time to dwell, contemplate. No ifs or butts... Just KEEP CALM AND CARRY ON attitude.. That is one of the greatest attributes my Mother has given me. Its got me this far 

   Searching the Internet and I am slowly contacting chatting to other Families, Individuals and knowledgeable professionals alike, that have links or an interest with AOS (Adams Oliver Syndrome).  Its not nice to know that others have gone, or are going though all the worry and the extreme emotion that my family have and are experiencing. My only hope is as we find each other we can share blood,sweat and tears. Be there when times are tough and advise, cross-reference on the little information that we get from our Medical Professions involved. 

Please add any comments (on the comment form) you like and it will post below.

Links of any information you feel others may benefit with, are always wanted again greatly received.

• My son was born with adams oliver syndrome and severe Aplasia - JustAnswer
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Disease Information from NORD, National Organization for Rare Disorders, Inc.