By Liana Jacob
MEET THE mum-of-four who has been ACCUSED of OVERFEEDING her FOUR-YEAR-OLD SON who weighs over EIGHT STONE due to a rare condition that causes excessive HUNGER – but despite trying to control his diet and HIDING FOOD his weight continues to increase at a rate of FOUR POUNDS A MONTH.
Stay-at-home mum, Trinity Leonard (23) from Washington, USA, knew there was something not quite right when her eldest son, Peter (4), was two years old.
She noticed a dramatic change in his appetite as his weight increased to 3st 8Ib, so she took him to the hospital to try and figure out what was wrong. She had heard about Prader-Willi syndrome, a rare genetic condition that causes a wide range of physical symptoms including an excessive appetite and learning difficulties.
When she researched it, she felt that the symptoms matched her son and she fought for doctors to get him tested for it but was constantly turned away. With no support from the medical professionals, she was forced to handle his condition by herself.
Over the years she attempted to regulate his food intake and encourage a more active lifestyle for not just him but for the whole family. However, no matter how much she tried to improve his eating habits, his weight continued to fluctuate at an alarming rate.
Within the last seven months he has gained nearly 2st. At the age of four, he currently weighs 8st 3Ib and struggles to move like other kids his age. He has two sisters, Candyce (1) and Daisee, who is six months old and a younger brother, Logan, who is just a year younger than him and weighs 2st 8Ibs.
Despite her consistent efforts to improve Peter’s lifestyle, Trinity has constantly been accused by strangers of overfeeding Peter. This has pushed her even more to try to raise awareness of Prader-Willi syndrome.
“I was the first person who noticed Peter’s weight gain and his insatiable hunger; when he was freshly facing these symptoms just before he turned two someone mentioned Prader-Willi Syndrome to me,” Trinity said.
“I have been battling with doctors ever since to listen to me and get him tested. He has continued to struggle with weight, and I am continuing to fight for him and be his voice to get him the help he deserves.
“No one wants to listen to my concerns, and a lot of doctors tell me they have no idea why he’s gaining weight so fast.
“He had always been a big boy, but when he was one and a half years old is when he really started packing on the weight, and that’s when I truly noticed his insatiable hunger, and his need to drink something all the time.
“At that time, we were battling a lot of his other conditions, and we were getting him set up for therapy services two times a week in home. We had a lot going on.
“I didn’t bring it up to any doctors until after he turned two when it started to become an issue, I didn’t think it was getting any better only worse.
“His weight gain fluctuated a lot; he gains weight at a rate of one to four pounds a month and most recently he gained over half a stone in two months.
“His condition affects his life in many ways; he can’t move around the same way other kids can. He gets winded very easily.
“It is very hard for him to walk long distances without some sort of help or us having to stop what we are doing.
“He doesn’t understand his own size or strength, so he can be very rough sometimes and he has got hurt underestimating his own size and strength.
“He already had low muscle tone so carrying around all this extra weight is hard on him. He also has severe obstructive sleep apnoea and his weight gain being so rapid, has caused his apnoea to not get any better at all.
“In all honesty, right now Peter’s Prader-Willi is at its worst. His hunger increases as he is getting older and it’s something we battle with daily.
“People have told us ‘he’s so fat because all you ever do is feed him pizza’ and others have said ‘maybe if you fed him better or didn’t let him eat whatever he wanted he wouldn’t be so big’.
“We’ve even chosen not to speak to some family anymore, because all they ever did was blame Peter’s condition on us.
“It makes me very sad that people are so closed minded, and they can’t see the changes my husband and I continue to make every single day to improve Peter’s life.”
Symptoms of Prader-Willi syndrome can include; excessive appetite and overeating, restricted growth and floppiness caused by weak muscles.
It is caused by a fault in a group of genes on chromosome number 15; this fault leads to a number of issues and is thought to affect the part of the brain called the hypothalamus, which produces hormones and regulates growth and appetite.
The condition can usually be confirmed by carrying out genetic testing. Trinity has fought for her son to be tested so that they could take the appropriate measures to reduce the symptoms of the condition.
“We try and manage his weight in lots of different ways; between the ages of one and two before we realised how much of a problem this was, he did eat like a normal kid, had snacks all the time, got spoiled with treats and sweet drinks,” she said.
“Then after he turned two and we started seeing this crazy hunger and we were seeing a dietician and nutritionist we changed his diet a lot.
“He eats a lot of smaller portions. He drinks mainly water, and one per cent or fat free milk. I sneak vegetables in for him when I can. We drink smoothies to get in fruits and veggies.
“We hide all of our food, and we keep it in boxes; he doesn’t have access to any food or drink unless it’s given to him.
“The kitchen is also closed off by a baby gate so that he cannot have access to the fridge or cupboards. We also started buying different things he likes with vegetables in it.
“We keep him very active. We play outside a lot; we go swimming all the time. I try and keep him on his feet and moving all day.
“We get out of the house and go to the children’s museum or we visit a fun bounce house place called jumpers jungle.
“Despite his diet change and active daily life, he still gains weight and that’s the scary part of rare genetic disorders of obesity, you can continue gaining weight even with diet and exercise.
“Our most common reaction from random people in public, is (and I quote), ‘wow you’ve got yourself a future line backer there’.
“Since Peter was one years old, I can’t tell you how many random people have said this to my husband and in public. It’s hard not to notice his size; people also always assume he is way older than he actually is.
“It makes me sad that they have to miss out on Peter’s amazing personality because they only choose to see things negatively and can’t be supportive.
“I love Peter more than anything in this world, I wouldn’t trade our journey and life together for anything. He amazes me with his strength to keep going and keep fighting.
“He always gets back up and keeps on running no matter what. I am still scared for his future, and his future struggles.
“But I know because of his silly personality, no matter what happens he is going to have a happy life. It gives me hope that he remains a ray of sunshine even through the storm.
“My advice would be to connect with other people who are going through the same thing, they have support groups on Facebook.
“Never stop fighting for your voice to be heard; doctors like to dismiss the condition as overeating or normal obesity.
“Don’t stop fighting to be heard and to get the help you deserve in managing this condition and know that this isn’t your fault, and you are beautiful no matter what your size is.”