Welcoming Words
If you have come to this site and are reading these words, the
probabilities are that you are the parent of a child with PHHI.
All the members of our growing family extend to you a warm and
understanding welcome.
It is with a great feeling of togetherness that we reach out
to families who have, up to now, been living alone with this difficult
and rare condition although it is with regret that we accept the
fact that there are more children than we would wish to with PHHI.
To discover that your child has a disease is difficult enough.
When you realise that the disease is rare, that most doctors know
little about it and that your friends and even family don't really
understand when you try to explain, then you might feel alone
and at loss.
Then you find us….
When you view our site and read correspondence from our support
group you may find that the volume of information that is suddenly
available to you is too much to handle on a single occasion; you
are right! Some parents, maybe mostly those whose knowledge of
the condition has been recently acquired, will feel scared and
overwhelmed and may see too many negatives sides of the illness
at once.
Rest assured that not all of the problems discussed here will
concern your child and most importantly, that each problem is
dealt with in its proper time.
On the support group you may find that the discussions take place
between parents who have known each other for a long time. Be
assured that our "doors" are always open and that we
will be more than happy to hear from you.
Whether or not you decide to join our group, there are a few
things we want every parent to remember.
Be aware that you are living a stressful situation. Exercise,
dance, sing, find activities you can do to occupy yourself, even
for short periods every day, to ensure you relieve the tensions
and recharge your energies so that you have the strength to withstand
the difficult days.
When living with a children, who have PHHI, the medical care,
the worries and the fear of the unknown, tend to take up all one's
energy but we mustn't forget all the love our children have to
offer. Remember that despite the PHHI there is a baby or a child
waiting to be enjoyed!
Our warmest regards,
The Web comittee
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