| Syndromes
and Conditions |
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We are currently looking for contacts for the following
families.
If you can
help please contact National Office 0508 236 236 or email us at national@parent2parent.org.nz
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| ACHONDROPLASIA:
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The
parent of a five year old child with this condition would like to speak
with a parent who has an older child with the same condition. Ref 4920 |
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| ASPERGERS
SYNDROME & BLIND: |
The
parent of a 10 year old child would like to have contact with the parent
of a child who has Aspergers syndrome and is completely blind to discuss
the associate problems and strategies for this dual condition. Ref 5097 |
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| BENIGN
INFANTILE SHUDDERS: |
The
parent of a two year old child would like to speak with another parent who
has a child with this relatively rare condition. Ref 3536 |
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| BODY
DYSMORPHIC DISORDER: |
The
mother of a teenage girl who has developed this disorder would like to speak
with another parent who has had a child with this disorder about strategies
to help rebuild confidence and self esteem. Ref 5187 |
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| CERVICAL
TERATOMA: |
The
mother of a young baby would like to speak to another parent whose child
has this rare congenital condition. Ref 4946
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| CHROMOSOME
DELETION 9Q34.3: |
The
family of a 12 year old son with the rare chromosome deletion would like
to have contact with another family who has a child with this condition.
Ref 4754 |
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| COHEN
SYNDROME: |
The
parents of two young adults with this syndrome would like to make contact
with other families that are affected by this syndrome with the view to
forming a New Zealand support group.Ref 4728 |
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| CONGENITAL
SUCRASE-ISOMALTASE DEFICIENCY (CSID): |
The
parent of two daughters with this disorder would like to have contact with
anyone who has first hand knowledge of the condition in regards to diet
and recipes and the actual condition. Ref 5556 |
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| CHROMOSOME
15 DELETION - DE NOVO TYPE: |
The
parents of a 12 month old child would like to make contact with another
family whose child has this non inherited chromosome condition and also
has an Atrial Septal Defect. Ref 5410 |
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| DOWN
SYNDROME & SEIZURES: |
The
parents of a 16 month old child would like to speak with another parent
who has a child with Down syndrome and severe seizures to discuss medications
and implications of the seizures and medication on development. Ref 4817 |
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| FANCONI’S
ANEMIA: |
The
mother of an 11 year old son would like to speak with another parent whose
child has this same condition.
Ref 4515 |
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| GORDON
SYNDROME: |
The
mother of a 14 year old would like to speak to another family who has a
child with this rare condition. Ref 5737
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| HYPOPHOSPHATASIA: |
The
mother of a seven year old child would like to speak with another parent
whose child has this condition to discuss this condition in general and
how it affects development. Ref 4674 |
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| ICHTHYOSIS:
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This
parent would like to speak with another family who have a child with this
condition to talk about how this condition affects a child and the long
term implications. Ref 5372 |
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| MICROPTHALMIA:
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The
mother of a 12 month old child would like to speak to another parent who
has a child with this condition. Ref 5085
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| MIRGRATING
PARTIAL EPILEPSY IN INFANCY: |
The
parent of an eight year old child would like to make contact with families
who have a child with this rare form of epilepsy. Ref 5525 |
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| MOEBIUS
SYNDROME: |
The
parent of a five year old child would like to speak with another parent
whose child has this condition and is older. Ref 4921
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| NEUROGENIC
BLADDER: |
The
mother of a 11 year old child would like to speak with another parent who
has a child slightly older with this condition and has to be catheterized.
Ref 4277 |
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| PACHYGYRIA:
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The
family of a six year old child would like to speak with another family who
have a child with this rare disorder. Ref 4616 |
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| PELIZAEUS-MERZBACHER
DISEASE: |
The
family of a young child with this condition would like to talk to anyone
who has first hand knowledge of this disease in its final stages. Ref 5495 |
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| SALIVARY
GLANDS REDUCTION SURGERY: |
This
mother would like to speak with another parent whose child has had this
surgery to reduce dribbling. Ref 4811 |
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| SIBLING
SUPPORT: |
The
adult sibling of a profoundly disabled person would to have contact with
another sibling of a person with numerous disabilities who has overcome
the personal problems associated with the sibling relationship and all it
entails. Ref 187 |
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| SLIPPED
UPPER FEMORAL EPIPHYSIS (SUFE): |
The
parent of a 15 year old would like to speak with another parent who has
first hand knowledge of this condition. Ref 524
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| TECTAL
PLATE TUMOR: |
The
parent of a 12 month old child would like to speak with another parent who
has a child with this condition. Ref 5305 |
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| TEMPORAL
SCLEROSIS: |
Mother
of 9 year old daughter who has a Left Mesial Temporal Sclerosis is looking
to talk to another parent who has a child who has aggressive defiant behaviour
relating to brain seizure activity. Ref 1000. |
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| TRICHORHINOPHALANGEAL
SYNDROME TYPE II also known as LANGER-GIEDION SYNDROME: |
This
family would like to have contact with another family who has a child with
this syndrome. Ref 1291 |
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| WILSONS
DISEASE: |
The
mother of a 17 year old would like to speak with another parent who has
a child with this condition who is of the same age or older. Ref 4755 |
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