Blyth girl, 4, battles rare metabolic condition that could cause brain damage

A younger woman with a rare metabolic condition could undergo brain damage, her dad and mom have mentioned.

Lucie Robertson was recognized with Phenylketonuria (PKU) simply six days after she was born.

Affecting one in each 10,000 infants within the UK, the dysfunction causes her physique to battle to interrupt down proteins in meals.

Lucie has excessive phenylalanine amino acid ranges and if they continue to be excessive and are left untreated, it could cause brain damage.

“I believed she was going to die,” her mum Holly Spratt mentioned.

“I by no means heard of the condition in my life. I simply thought the worst of the worst.”

From checking each label to measuring out parts, Holly lives in worry as she has to take additional care together with her four-year-old’s food plan.

Now handled with a food plan consisting of dietary supplements and low protein meals, Holly’s coronary heart breaks when little Lucie has meltdowns about not with the ability to eat what her two brothers have.

The 28-year-old mum from Blyth, Northumberland, added: “Every day is a battle.

“We must measure each little bit of meals that goes into her mouth.

“It’s actually exhausting to handle, making an attempt to get a four-year-old to take dietary supplements shakes is difficult when she sees what her two brothers are consuming.

“We are so fortunate to have meals prescribed like pasta and sausage combine like a powder however they are not the identical and she or he would not actually take pleasure in them.

“It’s so exhausting to observe her battle and it is even worse now sending her to nursery, no-one is aware of concerning the condition.”

There is not any treatment for PKU however it may be handled by a managed food plan, dietary supplements and common verify ups to stop life-changing signs of the condition.

Holly has to keep away from giving Lucie excessive protein meals, equivalent to rooster, milk and eggs alongside synthetic sweetener which may be present in fruit squash.

But for a four-year-old baby who usually loves rooster nuggets, juice and different kids’s get together meals, Lucie’s food plan is way from regular for a lady of her age.

Every week, Holly provides her daughter a blood take a look at and sends it to the Royal Victoria Infirmary to verify her ranges of phenylalanine to evaluate how nicely she’s responding to her therapies.

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Holly, who works at Mecca Bingo, mentioned: “We are likely to not depart her with individuals who do not know her or about her condition as a result of they are going to be feeding her regular meals as a result of she appears to be like like a traditional baby when she’s not.

“What most individuals are unaware of is, if Lucie is not given the right meals and her food plan is managed incorrectly, within the worst-case state of affairs she could find yourself with brain damage.

“She began to know that meals like pizza makes her poorly so she’s going to say folks. But she’s nonetheless not fairly conscious of every thing she is unable to have but.”

After receiving assist from the hospital and NSPKU, the one UK charity devoted to bettering the lives of individuals dwelling with PKU, Holly and her household wished to present one thing again.

NSPKU is asking for the drug Kuvan to be legalised within the UK to assist folks with PKU to reside a traditional life.

Wanting to unfold consciousness about Lucie’s rare condition and becoming a member of the combat to legalise the drug that would enhance her life, the household are set to participate in a sponsored stroll

Holly, alongside her relations, are going to stroll 1136 miles in June with the purpose to lift £1,000 for NSPKU.

Holly added: “This is why we need to elevate consciousness to cease folks giving Lucy meals and to try to get the drug legalised so Lucy can have a greater life.

“If it wasn’t for the NSPKU and all their exhausting work, life would have been much more tough for not solely my household however different PKU victims’ households.

“Due to the pandemic, a variety of charity’s have struggled so we simply need to assist a charity near our hearts.”

To donate to her fundraise comply with this link and to comply with Lucie’s journey go to the household’s Facebook group.



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