Support SOFT Charity Trisomy 13/18
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Soft is a Charity which helps children born with Trisomy 13 and 18 as well as their families. They help through research, support and are more like a big family than just a charitable organisation.
Soft is not very well known therefore funding is very limited therefore they cannot do as much as they wish for these families.
Why choose SOFT?
SOFT UK was founded in 1991 and is now the UK's leading support charity for families affected by Patau's syndrome (Trisomy 13), Edwards' syndrome (Trisomy 18), and related conditions.
SOFT UK provides information and support at all stages following a prenatal diagnosis - whether a family decides to terminate the pregnancy early or allow it to continue.
SOFT UK also supports those who are caring for a baby or child with these conditions (often living with multiple and profound disabilities), and families if a bereavement occurs.
As a membership organisation, families can share their experiences through the SOFT UK website, members' magazine and annual members' weekends. Currently there are almost 600 SOFT member families.
Support is offered free-of-charge to all members of the family, including siblings of the affected child, for as long as required.
Estimates suggest that every year more than 800 families in the UK will receive a diagnosis of Trisomy 13 or Trisomy 18, with many more facing the challenges of an uncertain diagnosis.
Trisomy 13 (Patau Syndrome)
Patau's syndrome is a rare, serious genetic disorder caused by having an additional copy of chromosome 13 in some or all of the body's cells
Each cell normally contains 23 pairs of chromosomes, which carry the genes you inherit from your parents.
But a baby with Patau's syndrome has three copies of chromosome 13, instead of two.
This severely disrupts normal development and, in many cases, results in miscarriage, stillbirth, or the baby dying shortly after birth.
Babies with Patau's syndrome grow slowly in the womb and have a low birth weight, along with a number of other serious medical problems.
Patau's syndrome affects about 1 in every 5,000 births. The risk of having a baby with the syndrome increases with the mother's age.
More than 9 out of 10 children (over 90%) born with Patau's syndrome die during the first year.
About 5-10% of babies with less severe forms of the syndrome, such as partial or mosaic trisomy 13, live for more than a year.
Trisomy 18 (Edwards Syndrome)
Edwards' syndrome, also known as trisomy 18, is a serious genetic condition caused by an additional copy of chromosome 18 in some or all of the cells in the body.
Each cell normally contains 23 pairs of chromosomes, which carry the genes you inherit from your parents, but a baby with Edwards' syndrome has three copies of chromosome number 18, instead of two.
This disrupts the baby's normal development and, in many cases, causes them to be miscarried or stillborn.
Babies with Edwards' syndrome will have grown slowly in the womb and will have a low birthweight, along with a number of other serious medical problems. Of those that survive to birth, around half will die within two weeks and only around one in every five will live at least three months.
Around one in every 12 babies born with Edwards' syndrome survive beyond one year, and they will live with severe physical and mental disabilities. Some children do survive to early adulthood, but this is very rare.
Edwards' syndrome affects around one in 3,000 to 6,000 live births.
Soft is not very well known therefore funding is very limited therefore they cannot do as much as they wish for these families.
Why choose SOFT?
SOFT UK was founded in 1991 and is now the UK's leading support charity for families affected by Patau's syndrome (Trisomy 13), Edwards' syndrome (Trisomy 18), and related conditions.
SOFT UK provides information and support at all stages following a prenatal diagnosis - whether a family decides to terminate the pregnancy early or allow it to continue.
SOFT UK also supports those who are caring for a baby or child with these conditions (often living with multiple and profound disabilities), and families if a bereavement occurs.
As a membership organisation, families can share their experiences through the SOFT UK website, members' magazine and annual members' weekends. Currently there are almost 600 SOFT member families.
Support is offered free-of-charge to all members of the family, including siblings of the affected child, for as long as required.
Estimates suggest that every year more than 800 families in the UK will receive a diagnosis of Trisomy 13 or Trisomy 18, with many more facing the challenges of an uncertain diagnosis.
Trisomy 13 (Patau Syndrome)
Patau's syndrome is a rare, serious genetic disorder caused by having an additional copy of chromosome 13 in some or all of the body's cells
Each cell normally contains 23 pairs of chromosomes, which carry the genes you inherit from your parents.
But a baby with Patau's syndrome has three copies of chromosome 13, instead of two.
This severely disrupts normal development and, in many cases, results in miscarriage, stillbirth, or the baby dying shortly after birth.
Babies with Patau's syndrome grow slowly in the womb and have a low birth weight, along with a number of other serious medical problems.
Patau's syndrome affects about 1 in every 5,000 births. The risk of having a baby with the syndrome increases with the mother's age.
More than 9 out of 10 children (over 90%) born with Patau's syndrome die during the first year.
About 5-10% of babies with less severe forms of the syndrome, such as partial or mosaic trisomy 13, live for more than a year.
Trisomy 18 (Edwards Syndrome)
Edwards' syndrome, also known as trisomy 18, is a serious genetic condition caused by an additional copy of chromosome 18 in some or all of the cells in the body.
Each cell normally contains 23 pairs of chromosomes, which carry the genes you inherit from your parents, but a baby with Edwards' syndrome has three copies of chromosome number 18, instead of two.
This disrupts the baby's normal development and, in many cases, causes them to be miscarried or stillborn.
Babies with Edwards' syndrome will have grown slowly in the womb and will have a low birthweight, along with a number of other serious medical problems. Of those that survive to birth, around half will die within two weeks and only around one in every five will live at least three months.
Around one in every 12 babies born with Edwards' syndrome survive beyond one year, and they will live with severe physical and mental disabilities. Some children do survive to early adulthood, but this is very rare.
Edwards' syndrome affects around one in 3,000 to 6,000 live births.
Organiser
Meghan Masterman
Organiser