Tell us about yourself and your son ….we understand he has a very rare metabolic protein deficiency condition meaning he can’t have too much fat in his diet? How much does he love cheese?
We are a family of 4 who live in Leeds. Mummy (Emma 38), Daddy (Mark 42), Sister (Phoebe 6) and Sebastian (18 months). Unbeknown to us Sebastian was born with a very rare genetic metabolic condition called Trifunctional Protein Deficiency (TFP). After becoming very poorly January 2019 Sebastian was diagnosed with this protein deficiency. This is not something tested for in babies and Mark and I had no idea we were both carriers of this condition, something that is also very rare. There are less than 100 cases of TFP recorded anywhere. To explain a bit about this protein deficiency condition, and simply speaking; our bodies use enzymes to break down fats in our body. When there is a problem with one of these enzymes it means your body is unable to break down fats properly and use the fat stored for energy. Sebastian has a problem with one of these enzymes and can therefore not break down long chain fats from foods he eats.
There is no cure for TFP so in order to manage Sebastian’s condition he must have a high calorie, high carbohydrate but very low fat diet restricted in long chain fats (a formula that is not easy to find in most foods!). He must eat at regular intervals, avoiding long periods without food. He must also avoid extreme cold and over exertion as he does not have fat reserves to fall back on. If we don’t follow this he can become very poorly very quickly. To make this more difficult he is a very poor eater but one thing he loves is cheese! We therefore add cheese to many dishes we make, to encourage him to eat!
How did you find out about Eatlean protein cheese and what made you give it a try?
When we started weaning I searched google for low fat food ideas to introduce Sebastian to. Cheese was never something he could have as it is normally too high in fat. Then when I looked to see if there was a low fat cheese Eatlean came up as a result. Often things that are classed as low fat are still not low enough fat for Sebastian to have as in can only have around 7g of fat in his diet every day. With only 3g per 100g Eatlean is great! We then saw it in Morrisons and it was the only place we could buy it without having to pay postage online. Now, whilst it is good that more supermarkets stock Eatlean, they only have the cheddar so we have unfortunately not tried many of the other varieties of Eatlean cheeses or products. He also loves chocolate but most sweet treats and chocolate are far too much fat for him to enjoy.
How beneficial have you found introducing Eatlean to your son’s diet and how important has it been to be able to add cheese with his meals?
He is a typical toddler who loves to have cheese on his food and eat it as a snack, before we discovered Eatlean cheese was always off the menu but now he can enjoy it the same as everyone else. He has an older sister without the condition who LOVES cheese so now they can both enjoy the same snacks which is important for him not to feel he is being treated differently. She is also happy to eat Eatlean cheese and she is very fussy!
Have you and the rest of the family been eating it too?
We now regularly all eat and cook with Eatlean cheese and think it tastes great. We would like to try some of the other varieties of cheese.
What is your son’s favourite Eatlean dish?
Macaroni cheese with lashings of cheese! Also fish pie and enchiladas! I also love looking at the low fat recipes on the Eatlean web pages.
What advice would you give anyone who has children with a similar condition in terms of diet and nutrition?
Have patience and try to add as much flavour with alternative ingredients as much as possible to encourage your child to enjoy food.