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A list of Alfies symptoms that may be useful for others, updated as and when required: Please share we need to find a cure and need a name for his condition.

Originally started out with a small red rash on the ear

When he was two he was treated for Meningitis had all classic symptoms including the rash ( but wasn't it was this illness)


High temperature, but also a low body temp mainly at night

Spontaneous bruising, starts on legs, then covers entire body, more prominent on boney areas, and deep purple bruising/raised/lumpy/haemorrhaged.

Very low platelets up and down like a rollercoaster lowest 0. Hes had platelet transfusions.

Blood blisters in mouth, mainly insides of cheeks, leak blood onto pillow (low platelets)

Burst capillaries on tongue forming blood blisters that fill up and burst constantly, (low platelets)

Petetchiae red/purple 'dots' on the skin, can be on a line and look like a scratch, or can be lone, they are burst capillaries leaking blood under the skin.

Pale skin, can be clammy, often cyanosis like in appearance.

Exhaustion, to the point of laying down in street/pictures/anywhere really.

Increased irritability.

Aching/painful joints, specifically but not limited to the knees, can become hot to the touch and reddened, may cause slight limp on occasion, unable to walk,the antibodies that protect the joints are being eliminated by his immune system. latest 2018 prom party gowns in tea length

Days where he's unable to walk either from painful ankles, knees or exhaustion, he has a wheelchair.

He has days he cant feed himself or dress himself, climb the stairs etc

Heart murmur

Vitamin D deficiency

Rash across cheeks/face, chest & abdomen

Rash/dry reddish skin around lips, (often mistaken for lipstick recently)

Night sweats

Cough, mainly on a night

Behavioural problems, lack of concentration, we seem to find this is linked to when his FBC shows a low count

Enlarged lymph glands
Positive antibodies thyroid
Positive platelet autoantibodies

Intermittent lupus anticoagulant positivity

Cephalopathic illness

Clear Genetic results

Currently taking Sirolimus daily and IVIG every three weeks

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