When Tamieka’s newborn bub grew at a rapid rate, it was the start of something unexpected.
Here, Tamieka, 41, tells the story in her own words.
She’s grown 4cm,’ the nurse said. If I wasn’t looking at the tape measure, I wouldn’t have believed it. My daughter, Emily, had grown quickly since she’d been born four weeks earlier. ‘Isn’t that a lot in just a week?’ I asked, puzzled.
At birth, Emily weighed 3.6 kilos and was 50cm long.‘She’s beautiful,’ I smiled to my husband, Matt, 41. Our first week together went like a dream. But after that she struggled to sleep and constantly cried. At first we thought it was reflux.
She had red patches too, which the hospital said were stork marks – quite common in newborns.
Despite being unsettled, Emily was growing quickly. But that day, the reading shocked me. ‘You’re tall, and your husband is too,’ the nurse explained. ‘It’s in her genes.’ True, I thought. I’m 178cm and Matt is 182cm.Still, it seemed excessive.
By four months, our girl had gone from size 0000 clothes to outfits for one-year-olds. Worried, I pushed for tests but again was told Emily was just a big girl. That changed at 18 months when her chest and tummy started to hurt. Then, I spotted something odd on her chest. Could my toddler be developing breast buds?
A paediatrician suggested Emily was eating too much. There’s no way, I thought, frustrated. She ran around at day care for 40 hours a week and ate nutritious meals. At two, Emily’s body continued changing. She needed deodorant for body odour and grew body hair. And the ‘stork marks’ were finally diagnosed as acne.
My little girl was becoming a teenager in front of my eyes. Yet no-one knew why. ‘It’s cosmetic,’ one doctor said. ‘You could shave the hair.’ Other tests showed that Emily had the bones of an eight-year-old. ‘Does that mean she’ll keep ageing?’ I asked. ‘Is her life expectancy shorter?’ ‘I honestly can’t tell you,’ the specialist said.
I pushed for answers and when she was four, an endocrinologist checked her hormones. The results stunned me. ‘Emily has the hormone levels of a pregnant woman,’ the specialist said. The levels were so unusual that they ran the tests again.
Her insulin growth factor levels were sky high, so they started genetic tests, looking for the growth condition gigantism. I wanted to scream, I felt so helpless.
At day care, Emily loved playing with the younger bubs. ‘I’m his mum!’ she beamed, pointing out a baby boy. ‘Can we bring him home?’ It was adorable, but I wondered if her hormones were giving her maternal feelings.
Heartbreakingly, Emily was teased for her size. So we tried to teach her to ignore the cruel words. ‘You’re our beautiful, special princess and having a kind heart is all that matters,’ we said. Like a teenager, our gorgeous girl even worried she was ugly and became interested in make-up. Matt and I agreed to try to keep her focused on childish interests. ‘I don’t want her to miss out,’ I said.
Last December, things got even tougher when Emily began menstruating at the age of four. Her first period confused her. So I tried not to make a fuss or frighten her. Given her other symptoms, I wasn’t shocked. But it was a sad moment. What do I say to her? I thought.If she’d been a teenager, I’d have told her she’d become a woman. But my girl was far from that.
Before her period, she gets sensitive and cries easily. ‘What’s wrong?’ I asked as she sobbed at a cartoon. ‘The pony is lost!’ she explained, devastated.
Earlier this year I bought her some bras. As we tried them on, I again felt Emily had been cheated of her childhood.
Finally, in July this year, we got the diagnosis we so badly needed. After posting my frustrations on Facebook, I was urged to contact Laura’s Place – a therapy centre for children.
There, I was recommended a doctor who diagnosed Emily with Central Precocious Puberty, a rare condition causing early puberty, coupled with Addison’s Disease, which affects the adrenal glands. She also has other conditions, including autism and anxiety disorder.
As I listened, I felt numb.How much more could my little girl face?
In October, Emily started HRT injections with the aim of stopping her puberty until she’s the right age. These hormones create challenges in themselves and Emily also needs therapy for weak muscles caused by Addison’s. Treatment is very expensive and Matt and I are often forced to miss work.
Financially, it’s been hard, so we set up a GoFundMe page. We’re so grateful to everyone who has donated. Now, we want to raise awareness to help other families and protect our caring and generous daughter from bullies. She’ll soon start school and we’re frightened about what she’ll face.
I’ve bought her a bag, a pencil case and a little purse for her sanitary products. Our girl has missed out on childhood freedoms, but we are determined her future will be brighter.
To help, go to gofundme.com/emilys-space
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