Diagnosis & need
Au pair support for a genetic condition or rare disease
Support for families with children with rare syndromes and genetic conditions
When a child lives with a genetic condition, a rare syndrome or a rare disease, parents often know a very particular situation:
A diagnosis that carries enormous weight within their own family life — and that hardly anyone outside the family has ever heard of.
Perhaps you have to spell out the name of the syndrome again and again. Perhaps, with every new contact, you explain from scratch what your child can do, where they need support and why certain things work differently.
At Besondere Sterne, you do not first have to check whether your child's diagnosis fits some list.
We place au pairs specifically with families with children with and without a disability or additional needs — including families with children with genetic conditions, genetic syndromes and rare diseases.
Genetic condition, genetic syndrome or rare disease — every child is different
Genetic differences can affect a child's development in very different ways.
Some children have a developmental delay or an intellectual disability. Others mainly live with physical limitations. Some have epilepsy, a sensory disability or a chronic illness.
In other children, several areas of development are affected at the same time.
And even two children with the same genetic diagnosis can develop in completely different ways.
That is why our placements do not focus solely on the name of a syndrome.
What matters far more is:
Who is your child — and what do they need in their everyday life?
Au pair support for Down syndrome, Williams syndrome, Angelman syndrome, Rett syndrome and other rare conditions
Families can approach Besondere Sterne regardless of their child's specific genetic diagnosis.
This includes, for example, children with:
- Down syndrome / trisomy 21
- Williams syndrome
- Angelman syndrome
- Rett syndrome
- Prader-Willi syndrome
- Fragile X syndrome
- Cri-du-chat syndrome
- Cornelia de Lange syndrome
- Smith-Magenis syndrome
- Noonan syndrome
- Turner syndrome
- Klinefelter syndrome
- DiGeorge syndrome / 22q11.2 deletion syndrome
- Wolf-Hirschhorn syndrome
- Kabuki syndrome
- Phelan-McDermid syndrome
- Pitt-Hopkins syndrome
- Kleefstra syndrome
- Sotos syndrome
- CHARGE syndrome
- Dravet syndrome
- Tuberous sclerosis
- Neurofibromatosis
- Spinal muscular atrophy (SMA)
- Muscular dystrophies and other neuromuscular conditions
- as well as many other rare genetic conditions and syndromes.
This list is, of course, not exhaustive.
Your child's diagnosis does not need to appear here for you to be in the right place with us.
What does a rare disease mean in everyday family life?
There is no one answer to this.
A child with a rare genetic condition may move through their day almost independently and need support only in individual situations.
Another child may need more support with everyday routines because of a developmental delay.
Another child may communicate little or not at all using spoken language.
Other children may need a wheelchair or other aids because of a physical disability.
Epilepsy, visual or hearing disabilities, difficulties with eating, sleep problems or an increased need for supervision can also play a role with certain rare conditions.
This is exactly why we do not want to place families into a category based on a diagnosis.
We want to know:
What does your child look like — not on paper, but on an ordinary Tuesday at your home?
How can an au pair support a child with a genetic condition or rare disease?
An au pair's tasks depend on the child's age, developmental stage and individual needs.
An au pair might, for example:
- play, read, do craft activities or be active outdoors together,
- accompany everyday routines,
- support getting dressed, tidying up or mealtimes,
- take on the school or kindergarten run,
- accompany the child to therapies or leisure activities,
- help maintain familiar daily routines and structures,
- give the child more time for everyday tasks,
- learn and use the agreed forms of communication,
- accompany free time and afternoons,
- look after siblings,
- prepare simple meals for the children,
- take on light everyday tasks involving the children,
- provide babysitting within the agreed working hours.
Which of these tasks suit a family is something we discuss individually.
The au pair does not need to already know the diagnosis
Especially with rare diseases, it would be unrealistic to expect an au pair to already have experience with exactly the same syndrome.
Perhaps an au pair has never heard of Williams syndrome.
Perhaps they do not know Angelman syndrome.
Perhaps your child's diagnosis is the first time they encounter it.
That does not automatically mean this person cannot be a good fit for your family.
What can matter far more is whether the au pair already has experience with similar support needs.
Do they know children with a developmental delay?
Do they have experience with children with an intellectual or physical disability?
Can they communicate patiently with a child who uses little spoken language?
Are they attentive and responsible?
Can they adapt to fixed routines?
And above all:
Are they willing to get to know your child?
You are the experts on your child
With rare diseases, parents often know more about their child's particular condition than anyone newly meeting the child.
You know what certain sounds mean.
You know the situations your child loves or finds difficult.
You know how your child communicates, how much support they need and which routines work.
You pass this knowledge on to your au pair.
The au pair does not need to arrive with a medical textbook on your child's diagnosis.
They need to be willing to listen, to learn, and to reliably carry through the routines you set out in everyday life.
When communication works differently
Some children with rare genetic conditions speak little or not at all using spoken language.
That does not mean they have nothing to say.
Depending on the child, signs, pictures, symbols, communication devices, eye movements or other forms of augmentative and alternative communication may be part of everyday life.
An au pair can learn how this particular child communicates.
This is not about mastering a specialised communication method professionally within a few days.
It is about being attentive and understanding and respecting the child's own way of communicating.
When several disabilities or conditions occur together
With some genetic conditions, the particularity does not affect only a single area of development.
A developmental delay may, for example, occur together with an intellectual or physical disability.
Epilepsy, sensory disabilities or chronic illnesses may also be present.
This is sometimes referred to as multiple disabilities.
In these families especially, it is important to discuss precisely which tasks arise in everyday life and which of these can sensibly be taken on by an au pair.
Because here, too:
It is not the number of diagnoses that decides whether an au pair can support a family.
What matters is the actual support needed.
An au pair is not a carer or a therapist
Even with a child with a rare disease, the role of an au pair remains clear.
An au pair is not a qualified care professional, not a medical professional and not a therapist.
They do not provide medical care, therapy or tasks that require a corresponding professional qualification.
If a child needs medical care or extensive nursing support, this must continue to be provided by parents or by appropriately qualified people.
What the au pair can do is take on exactly the area that keeps running alongside all of this, every day:
Family life.
Do not forget the siblings
Families with a child with a rare disease often spend a great deal of time on diagnostics, therapies, specialists or hospital appointments.
And meanwhile, the siblings' lives carry on.
Kindergarten.
School.
Football training.
A birthday party.
Homework.
An afternoon at the playground.
An au pair can therefore also be an important person for siblings to rely on.
While parents attend an appointment with one child, the au pair can be there for the others.
This can create relief in a place you might not initially have thought to look for support.
And what if we do not yet have a diagnosis?
Some families spend years searching for a diagnosis.
Perhaps you already know that your child develops differently. Perhaps there are unusual signs or various medical findings, but no clear cause has yet been found.
You are also in the right place at Besondere Sterne.
Your child does not need a completed genetic diagnosis for us to search for a suitable au pair together.
Families with a child without a diagnosis are also welcome to contact us.
Finding an au pair for a child with a genetic condition or rare disease
At Besondere Sterne, we support families with children with genetic conditions, genetic syndromes and rare diseases in finding a suitable au pair.
Whether Down syndrome, Williams syndrome, Angelman syndrome, Rett syndrome, Prader-Willi syndrome or a very rare diagnosis that many people have never heard of:
You do not first need to explain to us why your family belongs at Besondere Sterne.
Together, we look at who your child is, what they need in everyday life and which qualities and experience an au pair should bring for your family.
You can then get to know suitable au pairs and decide for yourself which person is the right fit for your child and your family.
Getting to know each other
Looking for an au pair for a child with a genetic condition, genetic syndrome or rare disease?
Then get to know our au pairs and find support that fits your everyday family life.
Besondere Sterne is an au pair agency — not a special-education service and not an advice centre. For legal and specialist questions there is the EUTB: teilhabeberatung.de. Go to whichever advice centre you feel comfortable with.