According to a recent article, a young girl’s struggle with mitochondrial disease has led to a mitochondrial donation bill finally being brought to vote in Parliament in Australia.
Mitochondrial Diseases
Mitochondrial diseases (or disorders) refers to a group of inherited conditions that affect the mitochondria. The mitochondria are the structures in each cell of the body that are responsible for making energy, so people with these conditions could have almost any body system affected, most commonly, the brain, muscles, heart, liver, nerves, eyes, ears, and kidneys.
Symptoms:
The symptoms of mitochondrial diseases may be present at birth, but can occur at any age. Furthermore, because mitochondrial diseases can affect almost any body system, the signs, symptoms, and the severity of the disorders can vary greatly. With that being said, the most common features include the following:
- Poor growth
- Loss of muscle coordination
- Muscle weakness
- Seizures
- Autism
- Vision and/or hearing problems
- Developmental delay and/or learning disabilities
- Heart, liver, and/or kidney disease
- Gastrointestinal disorders
- Diabetes
- Increased risk of infection
- Dementia
Maeve’s Story
Maeve Hood is a five-year-old girl living with a severe mitochondrial disease called Leigh syndrome. Unfortunately, this diagnosis means it is unlikely she will live past her eighth birthday. Despite her diagnosis, she remains a happy and mostly carefree little girl.
Her parents, Joel and Sarah Hood, became advocates for IVF technology that could prevent mitochondrial disease ever since Maeve was diagnosed. Despite how hard it is for them to continuously be reminded of their daughter’s dire diagnosis, their goal is that her life will not be in vain.
The Mitochondrial Donation Bill
The mitochondrial donation bill, also known as Maeve’s Law in her honor, will allow for the preventative treatment of mitochondrial donation which replaces the faulty mitochondrial gene in an egg cell with a working gene from a donor egg.
If this bill is passed, it would mean that children who would have been born with an inherited genetic condition can instead live long and full lives that aren’t cut short by the disease.
However, the bill has caused some controversy with people who believe it is wrong from an ethical standpoint. Their issues with the bill include the donation of the eggs and the small amount of safety and efficacy of the procedures.
Those who are in support of the bill argue that this is a terrible disorder with no cure, and the only options are preventative measures such as mitochondrial donation. Despite what naysayers believe, the genetic alteration will provide strict, legislative oversight and will start with only a couple medical facilities starting trials to find out the best methods.
Since the condition is genetic, many who would pass on the gene have decided to wait to get pregnant until after the bill is passed, have chosen to adopt, or have hoped for the best and fallen pregnant.
The bill was set to go to a conscience vote in Parliament the week of December first. A conscience vote is where the legislators are allowed to vote based on their own personal conscience. Monday, November 29, started the debated on the bill.
