This page offers gentle information about grief, bereavement and remembrance in Hurler syndrome, and suggests ways to find support and honour the life of the person who has died.
This page is for general information only and cannot replace personal support. If you feel overwhelmed or unsafe, please contact your local emergency services, crisis support line or healthcare team.
A space to acknowledge loss
Hurler syndrome is a serious, life-limiting condition for many children and adults, even with HSCT, enzyme replacement therapy and modern care. For some families, the journey includes the death of a baby, child, teenager or adult loved one.
This page aims to:
- Acknowledge that bereavement is part of the reality of Hurler syndrome
- Offer simple explanations of common grief reactions
- Suggest ways to remember and honour the person who has died
- Point to sources of support for parents, siblings, relatives and professionals
Every loss is individual. There is no “right” way to grieve.
When illness and loss are closely linked
Grief around Hurler syndrome can feel different from other bereavements because there may have been:
People often describe a mix of emotions: love, sadness, anger, guilt, numbness, relief that suffering has ended, and pride in their child or loved one. All of these can be normal.
Emotional reactions
- Intense sadness, longing or emptiness
- Anger at the illness, at events, or sometimes at professionals
- Guilt about decisions, thoughts or moments they wish had been different
- Moments of relief or peace, which can also trigger guilt
Physical and cognitive changes
- Trouble sleeping or sleeping much more than usual
- Changes in appetite, energy and concentration
- Intrusive images of the last days or hours
- Feeling “on autopilot” or disconnected
Grief does not follow a straight line. Intense waves can appear months or years later, especially around anniversaries, birthdays, school milestones and family events.
Social and practical impacts
- Feeling distant from people who do not understand rare disease
- Difficulty returning to work, school or usual routines
- Pressure to “move on” too quickly from others
"There is no right or wrong way to grieve"
Parents and primary carers may:
- Relive medical decisions, hospital conversations and the final days
- Question whether they did “enough”, even when they did everything they could
- Feel their identity as a parent or carer has been shaken or lost
Siblings may:
- Feel sadness, confusion, anger or jealousy of the attention given to the child who was ill
- Miss a brother or sister who may always have been part of their life
- Worry that they or other family members might also become ill
Grandparents and extended family may:
- Grieve both the child and the pain of their own children (the parents)
- Feel unsure how to help and afraid of saying the wrong thin
Grief styles can differ within the same family. Some people cry openly, some focus on practical tasks, some need to talk repeatedly, others feel more private. None of these approaches is wrong.
Sources of support may include:
- Bereavement services linked to hospitals, hospices or community organisations
- Psychologists, counsellors or psychotherapists experienced in grief
- National and local child or family bereavement charities
- MPS and rare disease organisations that offer specific bereavement support or connect bereaved families
- Faith or belief communities, for those who find this meaningful
Support can be accessed:
- Soon after a death, if emotions feel overwhelming or practical help is needed
- Months or years later, if grief feels “stuck” or especially intense at a new stage of life
It is always acceptable to ask for help, even if others think “enough time has passed”.
Recognising when you need urgent help
Sometimes grief can be accompanied by:
- Persistent thoughts that life is not worth living
- Ideas about harming yourself or ending your life
- Using alcohol or drugs heavily to block feelings
- Feeling unable to care for yourself or other dependants
If this happens:
- Seek urgent help from your local emergency services, crisis line, mental health service or on-call medical team
- Let a trusted person know how you are feeling and ask them to help you access support
Grief can be intense, but you do not have to face these feelings on your own, and help is available.
Parents and primary carers may:
If you know someone whose child or loved one with Hurler syndrome has died, you can help by:
- Acknowledging the death simply and kindly
- Using the person’s name if the family seems comfortable with that
- Offering specific practical help (meals, lifts, childcare) rather than “let me know if you need anything”
- Being willing to listen more than talk, without rushing to “fix” feelings
- Remembering important dates (birthdays, anniversaries) and gently checking in
Avoid:
- Saying “at least…” statements (for example “at least they are no longer suffering”, unless the family uses those words first)
- Pressuring the family to be positive, move on or be grateful
- Sharing medical opinions or second-guessing decisions
Small, steady acts of kindness often mean more than big gestures.
For healthcare professionals
Professionals involved in the care of a child or adult with Hurler syndrome may also be affected by their death. Helpful steps can include:
- A follow up letter, card or call to the family, where appropriate and culturally acceptable
- Offering a follow up meeting to discuss what happened and answer questions, if the family wishes
- Ensuring bereavement support information is provided
- Holding team debriefs or reflective sessions for staff
- Reviewing clinical care to identify learning, while recognising that not all deaths are preventable
Acknowledging your own feelings and seeking supervision or support is part of safe, compassionate practice.
Key points about bereavement and remembrance
- Some children and adults with Hurler syndrome die because of the condition or its complications, and their lives and families deserve recognition.
- Grief can involve many emotions, including sadness, love, anger, guilt, relief and numbness, often in changing combinations.
- Remembering and honouring a child, sibling or adult can take many forms, both private and public, and can change over time.
- Support is available from bereavement services, mental health professionals, MPS and rare disease organisations, and trusted community networks.
- If grief feels overwhelming or unsafe, it is important to seek urgent help and not face these feelings alone.
Support and community (overview)
Types of support and how to find it
Support groups
Peer and bereavement support options
Further detail from the source pages
Further detail4 sections
Practical support
Help with day to day life after a death
Mental health and emotional wellbeing
Coping with intense emotions and grief
Patient and family stories
Personal experiences of life, loss and remembrance
Support organisations
MPS societies, bereavement charities and rare disease groups