<div>Hi , As most of you know my daughter Lucy and her husband had their baby boy Toby 7 weeks ago who was diagnosed with Propionic Acidaemia. (PA) is a rare inherited metabolic disorder, which affects the protein pathway (can affect heart, brain, bone marrow etc.). It is a lifelong, life-threatening condition. The main complications associated with propionic acidaemia include recurrent episodes of metabolic decompensation with illness or fasting, cardiomyopathy, movement disorders, bone marrow suppression and recurrent pancreatitis
</div>
<div>Currently they are battling with the hse to supply Toby with a life saving drug called Carglumic acid. 
</div>
<div>This drug if approved will hopefully keep toby stable at home while they are working on long term treatment options . 
</div>
<div>The process has been started for liver transplantation which unfortunately is not carried out on the Island of Ireland , this will mean frequent travel and a long stay in London . 
</div>
<div>The other option currently being explored is clinical trial MRNA therapy based in Manchester. 
</div>
<div>Both of these treatment options will be time consuming but also extremely costly 
</div>
<div>If anyone had the ability to financially assist Toby on his battle we as a family would be extremely greatful 
</div>
<div>Thank you ❤️
</div>

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