The International Society for Mannosidosis & Related Diseases, Inc presents:

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October 4, 1999

 
From: "Smith, Dianne" <Dianne.Smith@mpls.frb.org>

We've been out of the hospital since September 15. Jenny has continually
gotten stronger, she is much more alert and very cheerful. She is able to
walk from room to room, come down the stairs and go to the bathroom, without
any help. She sleeps 8-10 hours at night and takes a 2-3 hour nap during
the day. When she's not in clinic, she's busy watching Backstreet Boys
videos, movies or browsing through cookbooks. She has recently been typing
her recipes from a notebook onto a PC diskette again. She likes to keep
busy and often doesn't want to stop her "work" for a meal or a trip to
clinic. She is so driven!

Her counts have been quite good, to give you a quick clinical update:
1.) She got 48 pills a day when we first left the hospital July 7; now she
gets 19 pills a day.
2.) She used to go to clinic 5-7 days a week for transfusions and labs; now
she goes 2-3 times a week.

Jenny is more affectionate and cuddly since her transplant. I see her being
more outgoing in clinic too, talking to strangers in the waiting room. I
feel that her diagnosis has made her feel more accepted, in spite of her
differences. This has given her a new confidence -- its been heartwarming
to see the transition.

Thanks to Paul Murphy in Baltimore, Maryland (Paul's 15 year old daughter,
Taryn, also has alpha-mannosidosis), Jenny has an online journal at
www.mannosidosis.org/jenny.htm. This new webpage is for family and friends
and also for past and future BMT families. We hope this information is
helpful, if you have any recommendations for additions or changes, let me
know.

We have our girl back. LIFE IS GOOD!

Keep us in your hearts and prayers. We think of you all so often,
especially during the tough times - it keeps us going because we just don't
want to let any of you down.

Love from the Smiths,
Steve, Dianne, Jenny and Jason

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