At 19 months, a healthy toddler can probably run, climb and bend over to pick up a toy from a standing position – but all of these milestones remain out of reach for Harmoney Woodside, who was born with arthrogryposis, a number of rare, nonprogressive muscle disorders, causing stiff joints and abnormal development of muscles.
With surgeries, Harmoney is expected to have a chance of an independent life – to walk and move her arms. Without the surgeries, Harmoney will be bedridden. Her parents, Courtney Farrington and Nathaniel Woodside, have been working to correct their daughter’s birth defects.
She began therapy in June, and can now roll over and almost sit up, according to her mother Courtney Farrington, who returned home with the toddler yesterday, from her most recent two-week therapy session for therapy on her arms and legs, and having her feet recast, due to them having relapsed because the splints she had previously been wearing got too small.
It has been “baby steps” to correcting Harmoney’s birth defects. The process of casting and splinting began in June.
Farrington said Harmoney’s doctors are now looking to commence the many surgeries her daughter will need.
Harmoney has been scheduled for knee surgery in February 2022, to make her knee straighter, which would enable her leg to straighten and bend. The deeply discounted surgery comes with a price tag of $150,000. Harmoney’s parents have to come up with the total sum for doctors to go ahead with the surgery.
“I’m hoping when we reach the $50,000 mark [raised], they would say let’s go ahead,” Farrington said optimistically.
The medical team is also preparing to do hip surgery on the toddler but she has to have knee surgery first.
“Honestly, I feel everything is going good – smooth,” said Farrington. “If I had insurance or if she was born in the [United] States, everything would go faster but everything is in God’s hands. I feel confident in Harmoney.”
As Harmoney continues to strive, Farrington said she has noticed her daughter trying to stand up because she wants to feel the ground like a normal person but said her daughter won’t be able to stand up without a good deal of therapy.
“I bought her a walker, so that she can try and she can sit in it and try and use her legs – but to say walk, not yet.”
While she cannot meet the developmental milestones of other children her age, the way she is totally normal, her mom said, is that Harmoney is talkative, and she describes her as a “smiley baby”.
“She loves people and loves to smile,” said Farrington.
Farrington and Harmoney returned home yesterday even though they were supposed to remain in the United States longer, so that Harmoney could continue therapy. But the mom said she did not have anyone that could stay with the toddler in Florida, and she had to return home to work to make money to allow Harmoney’s continued therapy sessions.
Farrington does not have a definitive figure as to how much money they have spent, to date, on Harmoney’s medical care.
“Honestly, I don’t really calculate because it’s too much. It’s a lot. I just take it one day at a time. It’s $300 a session alone for therapy and, when we are there, she has daily weekday therapy sessions, for the time we are there.”
Farrington bakes and uses the money she raises from her goodies sold to assist with her daughter’s medical expenses. She also has a job at the business of fellow church members who she said have been compassionate and allow her the time off to do what she has to do for Harmoney. Her bosses have also contributed financially to Harmoney’s expenses.
Farrington and Woodside saw Harmoney stand on her own feet for the first time in June, as a 13-month-old, albeit with the aid of a harness. They are hoping for the day that their daughter is self-sufficient.
There are four types of arthrogryposis – aymoplasia, distal, classic and syndromic. Harmoney’s parents are seeking to correct their daughter’s distal arthrogryposis, which affects only several joints, usually in the hands and feet, and range of motion may be mildly limited.
Harmoney’s arms and legs are affected. She also has clubbing hands and feet and had a stiff neck. At birth, her head touched her back, and Farrington said doctors did not think her baby would survive.
Having given birth in the midst of the COVID-19 pandemic on May 6, 2020, and lockdowns and curfews, Farrington never saw her daughter, who had been placed into the Neonatal Intensive Care Unit (NICU), until five days after giving birth via Caesarean-section.
She told The Nassau Guardian that when she initially saw her daughter, she didn’t look like a normal child.
“One of her legs was basically bent across, she had clubbed feet and clubbed hands, and her head was touching her back.”
The mom did not give into histrionics but rather said she remembers the happiness she felt because her baby was alive.
Harmoney remained in the NICU for three months before her mom was allowed to take her home. She was sent home with a feeding tube in her stomach and casts on her feet.
Farrington refused to believe her daughter would never be able to sit up, walk, feed herself, change her clothes, or bathe herself – everyday things that people take for granted. And with the support of her family, the new mom researched where and how to get help and treatment for her daughter. Once her daughter was no longer able to receive care at home, and with advice from doctors, Farrington sought medical care for Harmoney in the US.
In October 2020, she took Harmoney to Paley Institute in West Palm Beach, Florida. She said officials at the institute gave them hope.
The medical institution does not offer financial assistance. Harmoney’s medical expenses have to be paid for out of pocket. The toddler’s parents have made an appeal to the public for assistance through crowdfunding. A GoFundMe account, created on March 16, has seen $15,425 raised of a $500,000 goal.
Farrington said some people have also opted to make donations directly to the medical facility.
Harmoney is also expected to have surgery on her wrists and, possibly, her shoulders.
For most types of arthrogryposis, a rigorous treatment of physical and occupational therapy can be successful in the improvement of the range of motion of the affected joints. In addition, patients may need splints to increase the stretching exercises and increase the range of motion. Casting is frequently done to improve foot position. Some children require surgery to address any deformities that the child might have been born with, and can include elbows, feet, hips, knees and wrists. Surgery is generally recommended if more range of motion is needed after therapy has achieved maximum results.
With proper treatment, and surgeries, Harmoney is expected to be able to walk and have a normal life – one in which she can do things for herself. Her neck no longer touches her back, and the mom said they do exercises and therapy for her neck.
Despite Harmoney’s challenges, so early in life, Farrington said she is glad her daughter was not born with problems that aren’t rectifiable.
As she seeks assistance, to give her daughter a chance at a normal life, Farrington said Harmoney will have to undergo therapy for life but, until she is approximately five years old, she will need constant therapy. She also wants to bring awareness to the rare, nonprogressive muscle disorders that cause stiff joints and abnormal development of muscles.