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opportunity you had and what you learned at this fantastic
meeting. Work hard and let other Cuban children with PWS live!”
In October 2013 I organised a Meeting called “Convivencia” for
families with children affected by PWS in Cuba in cooperation with
Caritas. I personally raised funds for a two years project through a
tour of concerts I made in Rome in close cooperation with Caritas
at the Vatican.
Cuba is a big Island 1.200 km. long where 11 million people live,
distributed in 14 different provinces. The majority of parents who
participated to the 3 days “Convivencia” never travelled outside
their own town or province, because they cannot afford and never
stayed in a Hotel before.
In such a situation a Cuban family with a chid affected by Prader
Willi Sindrome or any other particular rare disease is left alone
to manage something they ignore without any guidelines and
information about the disease and what the future will bring.
Difficulties to contact other families not having access to any
communication system common in our countries increased their
frustration and loneliness. For this reason we planned a special
meeting for them in Ciego de Ávila called “Convivencia” from 18
until 20 October 2013 with all families hosted in a Motel located
in a nice area outside the town they achieved from the local
Government Office. We had an incredible participation in spite of
all communication and public transport problems and must thank
Caritas for their network of churches covering the whole island.
22 people with PWS from 4 until 34 years old participated with
their families coming from all Cuba territory. In total we had 64
people as families, plus volunteers and caregivers for a total of
over 90 persons involved. The meeting started on October the
18th in the morning with a very difficult and brave action as we
separated parents from their own children, which never happened
before. Parents were really worried and suffered a lot for that,
while it was much easier for the kids. Mariona Nadal from Spain
took care of them and coordinated the whole program at the Zoo
together with caregivers and volunteers she properly instructed
how to manage people with PWS. Everything went well without
any significant problem or crisis and they had to send messages
by mobile phone quite often to people following parents to keep
them calm and tell them not to worry about.
Parents immediately felt at ease and realised they had at last the
opportunity to achieve answers to questions they accumulated for
years. Sometimes we had to stop people’s outburst and talking
and let them often cry freely, as if a big glacier was melting. They
did appreciate our presence as a family coming from the other
side of the ocean with the oldest child of the group asking so many
questions about our experience in managing Daniele and having
also the possibility to ask him questions directly. I would like to
end this report to the Board translating from Spanish an email
sent to Moris Angulo by a doctor in Cuba the day before I left Italy.
This is the proof of what achievements we can have when IPWSO
succeeds in organising parents and professionals in a country:
Hi doctor! How are you? It’s a long time I have not your news.
I wish to inform you about something that made me very happy.
The Director of Health and Care in my province called me yesterday to
tell me they accepted my request to attend and follow children with
PWS. My patients have more than 20 years, so I was unable to follow
them at the hospital, being a paediatrician.
From now on I am allowed by the Government to attend them and
cure them at the Paediatric Hospital where I work, any time they need,
independently from their age!!
This permission allows me to continue being their own doctor.
Moreover they can achieve food at a favourable price even if they are
more than 18 years old. The good thing is that any other children with
PWS in Cuba can have the same treatment entering my hospital. A
good news at last!!
I know Loisel is gathering parents and children with PWS in these days,
but I am sorry I cannot join them. Anyhow, this is another dream come
true!
Take care
Julieta
“PARENTS CAN REALLY MOVE THE MOUNTAINS”
I would like to end my article with our personal stories and
experience, having a son with PWS who is an adult.
THE THERAPY OF LOVE
Our son Daniele is 39 years old today. After he finished his studies
at a professional school, he worked successfully in a couple of
factories for over 11 years and was happy to live a life that looked
normal to him. Two years ago, all of a sudden something changed
dramatically and we think someone at work offended him saying
he was a disabled boy without a future. He probably opened his
eyes on a different reality and realized he was nearly 30 years
old, most of his schoolmates were driving a car, had their own
apartment and were married with children… He had nothing
instead and no hope or expectations to have it in the future! He
fell into a depression, left his job and kept crying all day long.
Facing this crisis, we felt lost and desperate and took him to a
specialized Hospital in Milano. For the first time in his life he had to
take psychotropic drugs to overcome his paranoiac obsession and
after a few months he forgot about his Spanish identity and was
Daniele again. But he was no more the lovely, cheerful and caring
boy we knew and we had to accept this change and a new reality.
To worsen the situation ten months ago his brother Redi, who
is only one year older, became father of a beautiful boy whose
name is Alessio. You can imagine how happy we were, but Daniele
wasn’t and strongly refused to be called as a uncle and did not
[REV. MED. CLIN. CONDES - 2015; 26(4) 503-510]