<div><strong><em>[English explanation below]</em></strong>
</div>
<div><br />
</div>
<div><strong>Sterbehilfe genehmigt. Aber die Hilfe zum Überleben fehlt.</strong>
</div>
<div>Wir kämpfen darum, Heike Sachtleben am Leben zu halten.
</div>
<div><br />
</div>
<div>Seit viereinhalb Jahren ist Heike Sachtleben schwer krank. Heute ist sie vollständig bettgebunden und hausgebunden und verbringt nahezu ihr gesamtes Leben liegend in einem abgedunkelten, reizarmen Zimmer.
</div>
<div>Heike leidet unter schwerem <strong>ME/CFS und Long Covid</strong>, POTS, massiver Mastzellaktivierung (MCAS), autonomen und neurologischen Funktionsstörungen sowie schweren Störungen der Magen-Darm-Motilität.
</div>
<div>Ihr Zustand ist inzwischen kritisch.
</div>
<div><br />
</div>
<div><strong>Es geht jetzt um ihr unmittelbares Überleben.</strong>
</div>
<div>Die Notwendigkeit einer <strong>parenteralen Ernährung ist ärztlich festgestellt</strong>. Dafür braucht Heike dringend einen geeigneten zentralen Katheterzugang und eine dauerhaft gesicherte medizinische Versorgung.
</div>
<div><br />
</div>
<div>Durch ihre extreme Mastzellaktivierung verträgt sie vieles nicht, was in der normalen Medizin selbstverständlich ist. Nahrung, Medikamente, medizinische Materialien und Standardbehandlungen können schwere Reaktionen auslösen. Auch Licht, Geräusche und permanente Reize verschlechtern ihren Zustand deutlich.
</div>
<div><br />
</div>
<div>Deshalb braucht sie eine individuell angepasste Versorgung, Hausbesuche, Assistenz, medizinische Transporte und bei Krankenhausaufenthalten ein möglichst reizarmes Einzelzimmer. Vieles davon muss sie teilweise selbst finanzieren.
</div>
<div><br />
</div>
<div>Gleichzeitig wurde ihr im Krankenhaus deutlich gesagt, dass chronisch schwer Erkrankte nicht unbegrenzt stationär versorgt werden können.
</div>
<div><br />
</div>
<div>So entsteht eine fatale Versorgungslücke:
</div>
<div><strong>Zu krank für eine normale ambulante Versorgung - aber ohne eine langfristige Struktur, die sie auffängt.</strong>
</div>
<div><br />
</div>
<div>Auch eine ausreichende palliative Versorgung ist für sie bislang nicht erreichbar.
</div>
<div><br />
</div>
<div>Wir haben bereits alles versucht, was uns möglich war.
</div>
<div><br />
</div>
<div>Heike, Freunde und Unterstützer:innen haben sich an <strong>Krankenkassen, Behörden, Ämter, soziale Stellen und Nachbarschaftshilfen</strong> gewandt, Anträge gestellt und versucht, Versorgungslücken privat aufzufangen.
</div>
<div><br />
</div>
<div>Einzelne Hilfen wurden bewilligt, wofür wir dankbar sind.
</div>
<div><br />
</div>
<div><strong>Aber sie reichen bei weitem nicht aus.</strong>
</div>
<div>Vieles wurde abgelehnt oder ist für einen vollständig bettgebundenen Menschen mit schwerstem ME/CFS praktisch nicht nutzbar. Auch Freunde und private Helfer stoßen inzwischen an ihre Grenzen.
</div>
<div><br />
</div>
<div>Und genau hier liegt der Widerspruch:
</div>
<div><strong>Heikes Sterbehilfe ist inzwischen genehmigt.</strong>
</div>
<div><strong>Die ausreichende Hilfe zum Weiterleben nicht.</strong>
</div>
<div><br />
</div>
<div>Heike möchte leben.
</div>
<div><br />
</div>
<div>Sie hat die Sterbehilfe als letzten Ausweg beantragt, falls ihre Schmerzen und ihre Versorgungssituation irgendwann keine andere Möglichkeit mehr lassen.
</div>
<div><br />
</div>
<div>Doch jetzt kämpft sie um Stabilisierung und Überleben.
</div>
<div><br />
</div>
<div>Dass ein Weg zum assistierten Sterben möglich ist, während ein schwerstkranker Mensch gleichzeitig um Ernährung, Ärzte, Pflege, Assistenz und einen sicheren medizinischen Zugang kämpfen muss, empfinden wir als einen <strong>menschlichen und gesundheitspolitischen Skandal</strong>.
</div>
<div><br />
</div>
<div><strong>Warum wir 100.000 Euro sammeln</strong>
</div>
<div>Wir sammeln nicht für eine Wundertherapie.
</div>
<div><br />
</div>
<div><strong>Wir sammeln für Heikes Überleben und Versorgung.</strong>
</div>
<div><br />
</div>
<div>Die Spenden sollen insbesondere ermöglichen:
</div>
<ul>
<li>parenterale Ernährung und Katheterversorgung
</li>
<li>privatärztliche Betreuung und Hausbesuche
</li>
<li>Pflege und persönliche Assistenz
</li>
<li>medizinische Transporte
</li>
<li>Medikamente und individuell verträgliche Behandlungen
</li>
<li>reizangepasste Unterbringung bei notwendigen Krankenhausaufenthalten
</li>
<li>Unterstützung bei der Organisation ihrer komplexen Versorgung
</li>
</ul>
<div><br />
</div>
<div>Heike kann diese Aufgaben nicht mehr selbst übernehmen. Jeder Antrag, jedes Telefonat und jede organisatorische Belastung kostet Kraft, die ihr Körper nicht mehr hat.
</div>
<div><br />
</div>
<div><strong>Sie hat viele Jahre anderen geholfen. Jetzt braucht sie selbst Hilfe.</strong>
</div>
<div><br />
</div>
<div>Heike ist Therapeutin und hat über viele Jahre Menschen mit komplexen chronischen Erkrankungen begleitet, Wissen vermittelt und eine große Community aufgebaut.
</div>
<div><br />
</div>
<div>Sie begann außerdem mit <strong>HealthXperts und einer Akademie</strong>, um Ärzt:innen und Therapeut:innen besser im Umgang mit ME/CFS und komplexen Multisystemerkrankungen zu schulen. Auch ein Dokumentarfilmprojekt über die Realität schwer Erkrankter wurde von ihr bereits initiiert.
</div>
<div><br />
</div>
<div>Heute ist sie zu krank, um diese Arbeit selbst weiterzuführen.
</div>
<div><br />
</div>
<div>Wenn ihre unmittelbare Versorgung gesichert werden kann, möchten wir dafür sorgen, dass andere Menschen ihre begonnene Arbeit weitertragen.
</div>
<div><br />
</div>
<div>Doch zuerst gilt:
</div>
<div><strong>Heike muss überleben.</strong>
</div>
<div><br />
</div>
<div>Die 100.000 Euro stehen deshalb vor allem für:
</div>
<div><strong>Ernährung. Medizinische Versorgung. Pflege. Assistenz. Zeit. Überleben.</strong>
</div>
<div><br />
</div>
<div>Wer spenden kann, hilft unmittelbar.
</div>
<div><br />
</div>
<div>Wer Kontakte zu Ärzt:innen, Stiftungen, Unternehmen oder Medien hat oder organisatorisch helfen kann, kann ebenfalls einen großen Unterschied machen.
</div>
<div><br />
</div>
<div>Und vor allem:
</div>
<div><strong>Bitte teilt diesen Aufruf.</strong>
</div>
<div><br />
</div>
<div>Heike hat viele Jahre anderen geholfen. Jetzt braucht sie uns.
</div>
<div><br />
</div>
<div>Sterbehilfe genehmigt. Aber die Hilfe zum Überleben fehlt.
</div>
<div><br />
</div>
<div><strong>Bitte helft uns, dass Heikes Geschichte hier nicht endet.</strong>
</div>
<div><br />
</div>
<div>Von Herzen danke.
</div>
<div>Heikes Freunde und Unterstützer:innen
</div>
<div><br />
</div>
<div>******************
</div>
<div><br />
</div>
<div><strong>Assisted dying has been approved. But the support she needs to stay alive is missing.</strong>
</div>
<div><br />
</div>
<div>We are fighting to keep <strong>Heike Sachtleben alive</strong>.
</div>
<div><br />
</div>
<div>Heike Sachtleben has been severely ill for four and a half years. Today, she is completely bedbound and housebound, spending almost her entire life lying down in a darkened, low-stimulation room.
</div>
<div><br />
</div>
<div>Heike suffers from severe <strong>ME/CFS and Long COVID</strong>, POTS, severe mast cell activation syndrome (MCAS), autonomic and neurological dysfunction, as well as severe gastrointestinal motility disorders.
</div>
<div><br />
</div>
<div>Her condition has now become critical.
</div>
<div><br />
</div>
<div><strong>This is about her immediate survival.</strong>
</div>
<div><br />
</div>
<div>Doctors have determined that <strong>parenteral nutrition is medically necessary</strong>. To receive it, Heike urgently needs appropriate central venous access and reliable, continuous medical care.
</div>
<div><br />
</div>
<div>Due to her severe mast cell activation, she cannot tolerate many things that are considered routine in conventional medical care. Food, medication, medical materials and standard treatments can trigger severe reactions. Light, noise and continuous sensory stimulation can also significantly worsen her condition.
</div>
<div><br />
</div>
<div>She therefore requires individually adapted care, home visits, personal assistance, medical transportation and, whenever hospitalization is unavoidable, a private room with as little sensory stimulation as possible. She currently has to pay for many of these necessities herself, at least in part.
</div>
<div><br />
</div>
<div>At the same time, she has been explicitly told at the hospital that patients with severe chronic illnesses cannot receive inpatient care indefinitely.
</div>
<div><br />
</div>
<div>This has created a devastating gap in care:
</div>
<div><strong>Too ill for standard outpatient care - yet without a long-term care structure capable of supporting her.</strong>
</div>
<div><br />
</div>
<div>Adequate palliative care has also remained inaccessible to her so far.
</div>
<div><br />
</div>
<div>We have already tried everything within our means.
</div>
<div><br />
</div>
<div>Heike, her friends and supporters have contacted <strong>health insurance providers, public authorities, government agencies, social services and community support organizations</strong>, submitted applications and tried to bridge gaps in her care privately.
</div>
<div><br />
</div>
<div>Some forms of assistance have been approved, for which we are deeply grateful.
</div>
<div><br />
</div>
<div><strong>But they are nowhere near enough.</strong>
</div>
<div><br />
</div>
<div>Many requests have been denied, while other forms of support are simply not accessible or practical for someone who is completely bedbound with very severe ME/CFS. Friends and private caregivers have also reached the limits of what they can provide.
</div>
<div><br />
</div>
<div>And this is where the devastating contradiction lies:
</div>
<div><br />
</div>
<div><strong>Heike has now been approved for assisted dying.</strong>
</div>
<div><strong>But adequate support to keep her alive has not been approved.</strong>
</div>
<div><br />
</div>
<div>Heike wants to live.
</div>
<div><br />
</div>
<div>She applied for assisted dying only as a last resort - in case her pain and lack of adequate care eventually leave her with no other option.
</div>
<div><br />
</div>
<div>But right now, she is fighting to stabilize her condition and survive.
</div>
<div><br />
</div>
<div>The fact that a path to assisted dying is available while, at the same time, a critically ill person has to fight for nutrition, doctors, nursing care, personal assistance and safe medical access is, in our view, a <strong>humanitarian and healthcare policy scandal</strong>.
</div>
<div><br />
</div>
<div><strong>Why we are raising €100,000</strong>
</div>
<div>We are not raising money for a miracle cure.
</div>
<div><strong>We are raising money for Heike’s survival and care.</strong>
</div>
<div><br />
</div>
<div>The donations are intended, in particular, to help provide:
</div>
<ul>
<li>parenteral nutrition and catheter care
</li>
<li>private medical care and home visits
</li>
<li>nursing care and personal assistance
</li>
<li>medical transportation
</li>
<li>medication and individually tolerated treatments
</li>
<li>low-stimulation accommodation when hospitalization is unavoidable
</li>
<li>support in coordinating her highly complex medical and care needs
</li>
</ul>
<div><br />
</div>
<div>Heike is no longer physically able to manage these responsibilities herself. Every application, every phone call and every organizational task requires energy that her body simply no longer has.
</div>
<div><br />
</div>
<div><strong>She spent many years helping others. Now she needs help herself.</strong>
</div>
<div><br />
</div>
<div>Heike is a therapist who has spent many years supporting people with complex chronic illnesses, sharing knowledge and building a large community.
</div>
<div><br />
</div>
<div>She also began developing <strong>HealthXperts and an academy</strong> aimed at improving the training of doctors and therapists in the treatment and management of ME/CFS and complex multisystem illnesses. She had also already initiated a documentary project to shed light on the reality faced by people living with severe chronic illness.
</div>
<div><br />
</div>
<div>Today, she is too ill to continue this work herself.
</div>
<div><br />
</div>
<div>If we can secure the care she urgently needs, we want to make sure that others can carry forward the work she has begun.
</div>
<div><br />
</div>
<div>But first and foremost:
</div>
<div><strong>Heike needs to survive.</strong>
</div>
<div><br />
</div>
<div>The €100,000 therefore stands above all for:
</div>
<div><strong>Nutrition. Medical care. Nursing. Assistance. Time. Survival.</strong>
</div>
<div><br />
</div>
<div>If you are able to donate, your support will make an immediate difference.
</div>
<div><br />
</div>
<div>If you have contacts with doctors, foundations, companies or the media - or if you can provide organizational support - you, too, can make an enormous difference.
</div>
<div><br />
</div>
<div>And above all:
</div>
<div><strong>Please share this appeal.</strong>
</div>
<div><br />
</div>
<div>Heike spent many years helping others. Now she needs us.
</div>
<div><br />
</div>
<div><strong>Assisted dying has been approved. But the support she needs to stay alive is missing.</strong>
</div>
<div><br />
</div>
<div><strong>Please help us make sure that Heike’s story does not end here.</strong>
</div>
<div><br />
</div>
<div>Thank you from the bottom of our hearts.
</div>
<div>Heike’s friends and supporters
</div>

Anonymous

Annette Riedle

Susan Kelley

Monika Dräger

Jana Thierling

Max Schwarz

Christina Daman

Katrin Beer

raoul festante

Julia Haas

Laila Milon

Thomas Madej Convest GmbH

Isabell Michel

Agnieszka Stesny

Help Save Heike - Her Life Depends on It

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Help Save Heike - Her Life Depends on It

Still €16,360 to go. Help us build momentum.