HEMO LEADER : A series on the leaders of the Hemophilia community whose undying efforts to better the lives of PwHs is an example and inspiration to others

Together with you until my heart stops beating : 
Sonal P Sakariya, Chose her sweetheart,Chose Hemophilia!

Dear Reader,

Do not know how to  write  a story ?  A 19 year old  young  girl , pampered in family as she is the  only girl child  in a large  joint family transformed to a strong lady who fights against all odds of health , society and finance by a Midas touch of her first love . Yes  I am sonal .. Mrs. sonal sakariya , a wife  of PWH and caregiver ,volunteer for  haemophilia care .
 When I finished the schooling and started college I lost  my first heartbeat  to see  Paresh .. and from  that day I had not any beat without Paresh .  Paresh clarified me that he is PWH in our  first meeting  .I was not able to decide and was confused at the tender age of 19 yrs .. I thought that I  must dedicate my  self for my  first love .
WE do not belong to same caste, we do not have graduation   and there are many differences in our families traditions.  My family tried to counsel  me  , I replied that if some thing happens to me after marriage or if I marry a normal person and some aliments develops  to him what u will do ? I decided to marry  him and do not disclose his PWH status to my family, As a only girl child my parents and family respected my love and feeling and one fine morning we got married though belonging to different castes  has a great  social impact  before 25 yrs   . I married  “ haemophilia “  the same day . I started working for the cause .. I am proud and happy that since 5 yrs I am secretary of the society and Women's Group  Co-ordinator. I advise all that there are ups and down in everybody's  life .
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
I suggest all  PWHs , their wives  and everybody “ that accept and love  a person in totality not his good things only “
“There are some people who live in a dream world, and there are some who face  REALITY   AND MAKE DREAM TRUE “
 A journey of struggle started..  as it was a love marriage and not happily accepted by both the families we decided  to stand on our own , Paresh started a small industry of diamond cutting tools and I started helping him.
 I always advise the family, particularly women ( Wives, sisters ) to involve in the care of deficiency ..Accept the reality and challenge the reality   to transform it to well being .

                     My loving family

                                                               
Working for  the cause since long had given me opportunity  to get exposure to different kind of personality , thinking and learning , at the same time  helped me  realize my limitations  and upgrade my self  and expand the boundaries of limitations .. I wish to tell all ladies  that start working for the chapter.   You may face criticisms  , u may be involved in controversy but continue working as there is a saying that “ when you wear   a shoe , It may bite u “ but find the solutions of such “Bites” keeping all together.
I know  that every lady has the constraints of family , society, finance and many more ,but  I suggest all that please be strong , committed and focused to the gall ..Never waste your energy in small issues..
My involvement with chapter and   Women's group  had polished me in many ways and widened  my thinking towards PWH , Society and HFI .I came to learn and understand the issues of women  at different stages . I still remember the  day one of “ Trainers Training “ at Delhi and Sonal is trying to  change  from that day .This is the  impact of training Workshop in my life and I tried to share the same in Women's Group of my region

 The opinion which other people have of you is their problem, not yours.  Remember this  and dedicate your self for the  community .
At a chapter  or regional level  I had tried to give my best to lady members . PWH and CWH..I personaly feel that change should start from grass root level and reach on the top . we have many ladies with bleeding disorder , carriers , wives and mothers  expecting our support  ,who may be from remote village to cities
  We had started a small scale economical rehabilitation  project since 2002 and we are regularly upgrading it according to the  market needs .This projects may not earn huge amount of money , but give self confidence , and self sustainability to Women's Group .
We at chapter level always try to live   as a  family   and so mostly we celebrate all the occasions together .of course, not only celebration but in case of need of any PWH we remain together .. It is not “I” bet “WE”
The working for the cause  voluntarily  had made a drastic change and miracle in my life .. 3 yrs back Paresh  had abdominal bleed , on hospitalization doctor realized  that he is having lung bleed also and he was going into shock .. after primary treatment  on screening we realized that he developed  Inhibitors  .. 62 days of Critical care unit stay with tracheotomy  ,a black night started ..Every morning was coming with a new complication may be renal, oral bleed and last CNS bleed . It was very difficult to treat   him on available  medical infrastructure of the city .
A ray of sun came after 64 days stay CCU with the help , support and prayers  of all well wishers , HFI , HFI EC , family , doctors and of course team Rajkot ..  I am thankful and appreciate the efforts, prayers , wishes  of each every  body nationally and internationally  and of course I appreciate team Rajkot for constantly supporting me  to procure, manage,all medical, financial hurdles and managing 95,000   IU FIEBA AND NOVOSEVEN .
.. What a great gift given to me by Almighty God  and all haemophiliac community  !!!! I had decided to dedicate more religiously than .

 Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

I personally  enjoy working for the cause and  I feel  this is  my only hobby or u can say passion

             MY EXTENDED  FAMILY


 Advantages of Women's Group 

 Initiitiative
Responsibility
Ownership
Capacity Building
Self confidence & self esteem
Mutual help
Access to larger pool of resources
Channel of functioning

ISSUES AND LIMITATIONS of a lady :
The common Issues   which interfere in momentum of the WG are
            (1)  Language barrier
            (2)  Communication

Dedication  to the cause  varies individually .

Family Responsibilities .
Education.
No self Confidence.
Social   stigma  about particular deficiency.
Safety, security.
Social opinion also plays a major role.

Finally   wishing   all members   of our community happy, healthy life and bright future  !!