Hi and hello everyone.
This is a campaign for my nephew Daniyal - he is a 1-year and 7-months old baby who is fighting with a rare and life-threatening health problem known as Gaucher’s Disease.
He was only 6 months when the mom (my sister) noticed a ‘lump’ near his stomach which later known as Hepatosplenomegaly (enlargement of the liver and spleen). After series of consultation and visit to the doctor, fast forward to 1 year and a half later, blood results were out with him being positive for Gaucher’s Disease type 1 (non-neuronophatic) with possibilities to regress to type 3 (neuronophatic).
Daniyal is an active and bright baby but, his movements are often limited by the disease. Although he loves eating a lot, his has stunt growth (small legs, hands and only weigh around 7-8kg), and this has weakened his immune system to the point that he frequently get fever and bad cough.
The only chance Daniyal stands now is by undergoing Enzyme Replacement Therapy (ERTas the other option - Bone Narrow Transplant (BNT) - will take time. With proper consideration and rationals (also opinions from speacialists), so his parents decided to help to alleviate his pains and sufferings with ERT. Unfortunately, this treatment is beyond what my sister and her husband could afford. While their total household income is just around RM4000/month (1018USD), they need to bear the cost of the medication/month amounted to RM11490 (3741USD). That is 273% of their total income.
Name of treatment : Enzyme Replacement Therapy (ERT)
Medication name: Imiglucerase
Per Unit price: RM5745 @ USD1018
A year supply : RM298740 @ USD75960.62
Frequency : 2x per month
However, Daniyal is fortunate enough as he has been sponsored 3 months supply of the enzyme by Malaysia Lysosomal Diseases Association (MLDA) - which starts today (8 February 2018)
So, your help and kindness will help to ensure that Daniyal will have enough enzyme supply for at least another year - before a decision could be made to see whether or nor he will fit for BNT.
Reading about Gaucher’s Disease
Gaucher disease is a rare genetic disorder characterized by the deposition of glucocerebroside in cells of the macrophage-monocyte system. The disorder results from the deficiency of the enzyme glucocerebrosidase.
While Gaucher disease manifests with vast clinical heterogeneity, it has traditionally been differentiated into the following three clinical subtypes, delineated by the absence or presence of neurologic involvement and its progression:
Type 1 - Nonneuronopathic Gaucher disease
Type 2 - Acute neuronopathic Gaucher disease
Type 3 - Chronic neuronopathic Gaucher disease
Patients with type 1 disease commonly present with painless splenomegaly, anemia, or thrombocytopenia. They may also have chronic fatigue, hepatomegaly (with or without abnormal liver function test findings), bone pain, or pathologic fractures and may bruise easily because of thrombocytopenia. Bleeding secondary to thrombocytopenia may manifest as nosebleeds, bruising, or both." - MedScape
We appreciate every donation from all of us regardless of the amount - 1 USD can make a difference!
Your kindness will help Daniyal to live a normal life. We will pray for your health, too! Thank you
If you dont have paypal acc, you can donate to this acc number
Owner: WAN NUR AMANI WAN NORDIN (mother)
Acc no: 7611763850