Amelia Rose Seriously ill girl from Great Britain Date of Birth: 03.08.2012 Country: Great Britain

1. Biography of Amelia Rose
2. A Life Full of Challenges
3. A Long Search for Answers
4. A Rare Diagnosis
5. A Battle for Life
6. A Fight for Fair Treatment
7. Possible Change

Biography of Amelia Rose

Amelia Rose, a seriously ill girl from the United Kingdom, faced a huge problem right from the moment of her birth. Born on August 3, 2012, her parents, 29-year-old Shelley Beilby and her partner Robert Dainton, had no idea that something was wrong with their child. Unfortunately, after her birth, it was discovered that Amelia Rose suffered from a very rare and poorly understood degenerative condition.

A Life Full of Challenges

Amelia Rose spent a significant part of her short life in the hospital, where doctors conducted numerous tests and scans, but were unable to provide answers to her parents' questions. Her symptoms included hypoplasia, lissencephaly, and heterogeneous white matter in the brain. In addition, she experienced seizures, congenital amyoplasia, vocal cord paralysis, hypotonia, gastroesophageal reflux disease, hip dysplasia, joint contractures, and congenital talipes equinovarus.

A Long Search for Answers

Genetic doctors at Manchester Children's Hospital made extensive efforts to find the root cause of all these problems, but were unsuccessful. Amelia Rose's condition did not improve over the course of almost two years, as she continued to lose muscle tone and other bodily functions. Her parents desperately searched for answers, repeating MRI scans and muscle biopsies, hoping that something could be done to help their daughter.

A Rare Diagnosis

In December of last year, doctors were finally able to diagnose Amelia Rose with pontocerebellar hypoplasia type 1B (PCH1B). It is remarkable that she has survived for almost two years, as children with PCH1B typically do not live beyond their first year. Unfortunately, there is no treatment for this disease, as it is an inherited progressive neurodegenerative disorder. Amelia Rose will never be able to speak, walk, or attend school, as the symptoms of the disease cannot be managed.

A Battle for Life

Amelia Rose now faces her second biggest challenge in life. Her parents, Shelley and Robert, are fighting against the system and threatening legal action to keep their daughter alive. She is currently in the special care unit of Alder Hey Children's Hospital in Liverpool, one of the largest in Europe. However, the hospital's ethics committee recently ruled that the doctors could disconnect her from the ventilator. Shelley and Robert believe that as long as their daughter is alive, she has the right to continue living.

A Fight for Fair Treatment

The hospital claims that for each child, an agreement has been reached regarding the most appropriate care needed. After receiving the diagnosis, Amelia Rose's parents were told that there have been only a few documented cases of this disease worldwide, and that she has less than a year left to live. In March, with the support of the medical staff, a care plan was created for Amelia Rose until the end of her life, stating that she would not be subjected to resuscitation procedures if she were to have a seizure or her condition deteriorated in any other way. In such cases, the ventilator would be turned off. However, her parents want to change this decision. They claim that Amelia Rose is surprisingly stable and even believe that she is making progress, such as recognizing her parents. They view the current agreement as unfair. After everything she has been through, Amelia Rose's mother believes that she has the right to live, even if she were to catch a common cold. They are adamant that the care plan needs to be revised.

Possible Change

The hospital insists that, unfortunately, some of their patients cannot be helped and recommends leaving everything as it is. However, they do not rule out the possibility of amending the care plan for Amelia Rose, or as her parents affectionately call her, "Mimi."