THE CAVAN TOMMY HOEY TRUST (IRELAND)
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| Blog Name: | THE CAVAN TOMMY HOEY TRUST (IRELAND) |
| Url: | http://the-cavan-tommy-hoey-trust.org/blog/blogweb/i... |
| Language: | English |
| Topics: | Childrens Health, Diseases, Children |
| Description: | THE CAVAN TOMMY HOEY TRUST (IRELAND) Fighting XLP,EBVHLH,HELP US SAVE CHILDRENS LIVES FIGHT FOR FUNDING FOR RARE DISEASES |
| Popularity: | 3 Followers |
Blog Feed
Cavans Trip to George Best Belfast City Airport
| The Cavan Tommy Hoey Trust (Ireland) would like to thank all the staff and management at George Best Belfast City Airport in giving our grandson Cavan such a memorable time, as Cavan has been in hospital for such a long time with XLP,EBVHLH,his only experience of a two tone horn was an ambulance either rushing Cavan to hospital or hearing them while in hospital. My own experience with this was when Cavan was visiting us and |
Cavans Visit to The Belfast City Hall Northern Ireland
| Cavan In the seat of the Lord Mayor on his visit to Belfast City Hall The Cavan Tommy Hoey Trust would like to thank Belfast Lord Mayor Naomi long and Belfast City Council for the fantastic day they give our little grandson Cavan Grandaughter Maeve and Mum Debs. Cavan started his visit to Belfast with a greeting from George Best Belfast City Airport we thank Michelle Hatfield for the care she took in setting it up for us,Cavans illness s |
Inherited Immunodeficiencies: X-linked Lymphoproliferative Syndrome (XLP)
| X-linked lymphoproliferative syndrome (XLP) is an inherited disorder of the immune system that affects males. XLP is characterized by an abnormal immune response to infection with the Epstein-Barr virus (EBV). This is a common virus in the normal population, which causes infectious mononucleosis (“mono or kissing disease”). In normal individuals, EBV causes no long lasting ill effects. In individuals with X-linked lymphoproliferative syndrome, there is a mutation (mistake) in the XLP gene, SH2D1A/DSHP/SAP. This gene helps control the immune response to an EBV infection. As a result, males with XLP who are exposed to the EBV virus can have life-threatening symptoms. Patients with the dis |
Cavans Latest Update
| Yesterday, I went to Bristol to be with Cavan when he had his MRI scan. This process is old news to Cav now as he has ha many in his life thus far, I met with Deb and Cavan in Oncology Day-Beds on level 6 after his Mum and himself had a tumultuous journey to Bristol lasting some 5 and a half hours! We filled in all the nesscessary paperwork and waited until it was Cavs turn to head off to the BRI next |
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