| 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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| 22.q11
DELETION SYNDROME: |
The
mother of a small child with this rare disorder would like to speak with
a parent who has first hand knowledge of this condition and its symptoms.
Ref 4196 |
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| ANKYLOSING
SPONDYLITIS: |
The
family of an 18 year old would like to speak with another family who has
a family member with this condition that is of similar age or older. Ref
4262 |
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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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| ASPERGERS
SYNDROME IN GIRLS: |
The
parents of a two year old girl would like to speak with another family who
have a daughter with Aspergers Syndrome of a similar age. They are interested
in speaking about the unique behaviours associated with this condition in
girls. Ref 3612 |
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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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| BENIGN
INFANTILE SHUDDERING ATTACKS: |
This
is a relatively rare disorder that is affecting a 10 month old child. During
these attacks the child displays a generalized shudder mainly involving
the trunk. The parents of this child would like to speak with anyone who
has first hand knowledge of this condition. Ref 3536 |
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| BRAIN
TUMOUR: |
The
mother of a 12 year old daughter would like to make contact with another
family with a child of similar age who has or recovered from a brain tumour.
They would like to make contact with the view of the children becoming pen
pals. Ref 276. |
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| BRONCHIECTASIS:
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The
mother of a child with this condition would like to speak with another parent
who has a child with this condition about the long term effects and how
they have coped. Ref 3670 |
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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 |
| COMPLEX
PAIN REGIONAL SYNDROME: |
The
mother of a nine year old child would like to have contact with another
parent who has a child with this condition. Ref 4172 |
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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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| EPILEPSY: |
The
mother of a five month old baby would like to speak to another family who
has a young child that has had epilepsy from birth. Ref 2922. |
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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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| 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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| IDIOPATHIC
SOUND INDUCED DROP ATTACKS: |
We
would like to make contact with anyone who has had first hand experience
with this condition. Ref 2643 |
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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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| NEONATAL
HYPOGLYCEMIA: |
The
mother of a five year old child with this condition would like to speak
to another family who have a child with this condition to talk about the
characteristic of this condition and support. Ref 1175 |
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| OCCULAR
MOTOR APRAXIA: |
The
family of a four year old child would like to make contact with another
family who have a child with this condition. Ref 960 |
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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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| PTEN
HAMARTOMA TUMOR SYNDROME: |
The
family of an 18 year old would like to speak to another family who have
a member with this condition. Ref 2242 |
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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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| TERMINAL
DELETION OF X CHOROMSONE: |
Our
client would like to speak to anyone who has knowledge of this condition.
Ref 3185 |
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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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| 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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| VEIN
OF GALEN MALFORMATION: |
The
mother of a two year old child would like to have contact with a family
who has a child with this condition or similar. This is a very rare condition
affecting the blood vessels of the brain. Ref 1352 |
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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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