| 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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| ACUTE
DISSEMINATED ENCEPHALOMYELITIS: |
The
mother of a 16 year old girl would like to talk to a parent who has had
a child affected by this sudden illness to discuss the outcomes when the
brain has been extensively affected. Ref 4577 |
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| ARTIFICIAL
EYE & BRAIN HAEMORRHAGE: |
The
mother of an eleven month old child would like to speak with another parent
who has a child who has lost an eye and had a brain haemorrhage to discuss
experiences and progress. Ref 2984. |
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| BI-LATERAL
HIP DYSPLASIA SURGERY: |
The
family of an 18 year old would like to speak with another family who have
a family member who has had this surgery to discuss the procedure and recovery
period. Ref 4043 |
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| CATATONIA: |
The
family of a 16 year old would like to speak with another parent who has
a family member with this condition. Their concerns are with the changes
in behaviour and the different stages that affect the function to perform
usual daily functions. Ref 3522 |
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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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| CUTIS
MARMORATA TELANGIECTATICA CONGENITA (CMTC): |
A
rare condition that mainly affects the blood vessels of the skin. It looks
like a purple, marble-like pattern on the surface of the skin. Our parent
would like to speak with another parent who has a child with this condition.
Ref 3295 |
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| JEJUNAL
ATRESIA TYPE 3B (also known as DUODENAL ATRESIA, CHRISTMAS TREE ATRESIA
and APPLE-PEEL DEFORMITY): |
The
mother of a six month old child would like to speak with another family
who has a child with this condition. Ref 3456 |
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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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| FOCAL
SEGMENTAL GLOMERULOSCLEROSIS: |
Is
a type of Glomerular Disease that affects kidney function by attacking the
tiny units within the kidney where blood is cleaned. Our family would like
contact with another parent who has a child with this condition. Ref 2176 |
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| FRIEDREICHS
ATAXIA: |
The
mother of a child with this condition would like to have contact with another
family who have a child with this condition. Ref 3777 |
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| HAEMOPHILIA:
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The
mother of a one year old child would like to have contact with other families
who have a child of similar age with this condition. Ref 3173 |
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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: |
The
mother of a young child would like to have contact with another parent whose
child has this condition. Ref 3625 |
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| MACROCEPHALY:
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The
mother of a nine year old child would like to speak with another family
that has a child with this condition and behaviour problems. Ref 3021. |
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| MEDICATION
FUNDING: |
The
mother of a child whose medication is non government funded would like to
talk to other families that have been in a similar situation about how to
gain access to resources for funding of medications. Ref 2432 |
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| MOYAMOYA
DISEASE: |
The
family of this extremely rare disorder would like to speak with another
parent who has had a child with this condition. Ref 4189 |
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| MULTIPLE
EPIPHYSEAL DYSPLASIA: |
This
rare disorder that affects the growth of the long bones. The family of a
six year old child would like to speak with anyone who has knowledge of
this disorder. Ref 3147 |
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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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| PITT-
HOPKINS SYNDROME: |
The
parent of a child with this syndrome would like to have contact with a family
who has a child with this condition to talk about the associated breathing
difficulties. Ref 4289 |
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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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| SPONDYLOPMETAPHYSEAL
DYSPLASIA, KOZLOWSKI TYPE: |
The
family of a six year old child would like to speak with another parent who
has first hand knowledge of this rear genetic disorder and the corrective
surgery that accompanies this condition. SDK is characterised by reduced
calcification of the spine and pelvis resulting in short stature. Ref 3809 |
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| SUDDEN
VISION LOSS: |
The
parents of a teenage child would like to speak with anyone who has experienced
sudden vision loss for no apparent reason. Ref 4125 |
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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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| TRIPLE
X SYNDROME: |
The
parents of a 12 year old girls would like to speak with another family who
have a child of similar age or older with this syndrome. Ref 4642
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| TRICHOTILLOMANIA:
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The
mother of an 18 month old child would like to speak with another parent
who has a child with this condition at a young age. Ref 3874 |
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| UNBALANCED
CHROMOSONAL TRANSLOCATION 1 & 5: |
This
mother of a child with this rare chromosomal disorder would like to speak
with a parent who has a child with a similar condition. Ref 4778
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| VISION
RELATED LEARNING DISABILITY: |
The
mother of a 14 year old child would like to speak with another parent who
has a child with this specific condition to discuss ways to assist in his
learning and understand the situation. Ref 524 |
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| WEISSENBACHER-ZWEYMULLER
SYNDROME: |
The
family of a five year old child would like to speak with another family
who have a child with this condition to talk about development as her child
gets older. Ref 3594 |
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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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| WOLF-HIRSCHHORN
SYNDROME: |
The
mother of a young child with the extremely rare chromosomal disorder would
like to speak with anyone who has first hand knowledge of this condition.
Ref 4239 |
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