There is a case in the news that hits awfully close to home for me and other families who live with a chronically ill child…
There is a young lady, a 15 year old named Justina Pelletier, who has been removed from her parents’ custody and has spent a year in a psych ward at Boston Children’s Hospital. She had been diagnosed with mitochondrial disease and treated for a length of time by an expert and was functioning well until she got the flu, last February. Her specialist sent her to Boston Children’s for further treatment from a specialist she had seen previously. When she was there, she saw a neurologist who stated he didn’t believe in mito and that her true problem was ‘in her head’ – a somatoform disorder. The hospital took the view that her parents were medically abusing her by treating her for mito, even though she had a well respected specialist who had been successfully treating her and her sister also has been diagnosed with mito. They set in motion the actions to remove her from her parents custody. For almost the entire past year, she has been confined to a psych ward, receiving little if any medical treatment for her real problems and having very limited contact with her parents.
A few weeks ago, there was a hearing to decide what to do with her and she was sent to a residential facility pending further court dates. This residential facility is not set up to provide medical care and Justina’s condition is deteriorating. Her parents are frightened that this child, who prior to being taken out of their custody, was an active teenager who loved figure skating, is now confined to a wheel chair and is losing mobility and strength day by day. Her health is clearly declining and the parents have no ability to intervene.
Today, Justina and her family are back in court to decide her fate. She needs to be back in custody of her parents – there has been no investigation or evidence that they have done anything wrong. Their only wrong doing was disagreeing with a neurologist who had a god complex. She was simply removed from their custody and placed on the locked psych ward. Her rights have been grossly violated and her parents’ rights have been as well.
Time is running out for Justina – she must get treatment for her mito condition and she needs access to the people who will be her best advocates because they love her and to the specialists who know her situation. If you are so inclined, please pray for this family as they head to this very important hearing. Also, pray for the father, who is being charged with contempt of court this morning for breaking the gag order and speaking to the media about his daughter’s declining condition. If I were in his position, I would have done exactly the same thing and gladly spent time in jail if it would mean my child had a chance of getting help.
This case is terrifying for anyone with a chronically ill child. It appears that this is not just a territorial disagreement but rather a concerted effort to forcibly recruit patients for a very lucrative in patient treatment plan for a highly questionable diagnosis of somatoform disorder. Anyone with a chronic pain condition or a rare, poorly understood condition like EDS, is at risk of having their condition wrongly labeled as somatoform disorder – frankly, it happens a LOT. (Check out this video by Dr. Barnum (the 4th video on the list) on conversion and somatization disorders in regards to pediatric pain conditions. It paints a very clear picture as to the problems with this diagnosis.) We all need to care, because this is a very real threat to our chronically ill children.
As parents and as compassionate citizens, we must speak out for the helpless. Social media is the tool we have and we must spread the news, warn others and work to make sure this does not happen to any other child.
Read Free Justina Part 2 here