| Amy Moar may be a little to the smaller side of | | | | Amy also has the associated renal dysplasia. What |
| statuesque, but she has a heart that must be | | | | most of us understand as kidney failure. |
| warmer and bigger than most of the adults around | | | | Exactly two years ago, she received a donor kidney. |
| her. She's a beautiful, if undersized 12 year old, her | | | | It undoubtedly saved her life but in the process, it |
| tiny hands more akin to those of four year old and | | | | almost cost it. The Moars were, of course, thrilled to |
| her height in a similar age pattern. | | | | receive a donor kidney, but that it came from an |
| When she sings to His Holiness the Dalai Lama in | | | | adult meant there were someone's lifetime of viruses |
| Edinburgh's Usher Hall on 3 June, his intuitive love and | | | | in it. "When you receive a donor organ, you inherit |
| respect for all sentient life will be blessed with a very | | | | whatever viruses that person had, and of course a |
| special kind of awareness as he, in turn, blesses her. | | | | young child won't have built up immunity against |
| Amy's big moment comes about because the | | | | those," explains Anne Moar. The virus she inherited |
| co-ordinator of His Holiness's visit recently met her | | | | with the kidney her life depended upon ironically |
| music teacher, Janet Anderson. When he heard the | | | | caused a tumour to grow. Initially unable to isolate |
| story of Amy and of the song, he says "it was as | | | | where the growth was, it came to medical attention |
| clear as day that Amy should sing this at the Usher | | | | only when the little girl's gut dramatically ruptured as |
| Hall for His Holiness and the whole audience." | | | | a result of it. |
| "Janet woke up with this song in her head one | | | | At the Royal Blind School in Craigmillar, Edinburgh, |
| morning," says Amy. "It's called the Why of a Miracle | | | | Amy is discovering computers. "Yeah, we've got |
| and she asked me to sing it for the Dalai Lama, so | | | | special computers that have a switch called a big mac |
| we've been rehearsing a lot. And Phamie will come | | | | switch and when you press it a voice comes up and |
| and play the harp for me when we record it. We're | | | | says 'stop scanning' (American accent!). You can get |
| going to raise money for children in India. | | | | special cd-roms with special switches and stuff. And |
| "When Janet was at the orphanage in India, she saw | | | | we do Home economics, and music, and all sorts of |
| a rat, and she went 'Oh, mummy, mummy!" and then | | | | things. It's good. ICT is my favourite subject." |
| it wasn't a rat at all, it was a snake! So she was | | | | The day before we meet, Amy has been to a |
| really scared but it didn't get her in the end, thank | | | | concert. When we ask her to play something for us, |
| goodness." | | | | she sits at Janet Anderson's grand piano, propped up |
| The talented harpist and composer, Phamie Gow, is | | | | on an extra cushion, and plays Beethoven's Fur Elise. |
| indeed accompanying Amy for both the recording of | | | | Nothing extraordinary about that, you may think. It's |
| a CD which will be sold to raise money for Indian | | | | a piece many of us learned, but hold on. Amy has |
| children and for the Usher Hall event. | | | | never, ever played it before. In fact she has never |
| Amy is also completely blind, with absolutely no | | | | even heard it until yesterday. She is replicating what |
| functional sight. Most people registered as blind do | | | | she heard, entirely by ear and memory. |
| have some limited vision. Amy has none and never | | | | No one really knows for sure what's up ahead. The |
| has had. Her visual perception is non-existent. She | | | | next big challenge will be the spinal curvature and its |
| must define her life in other ways, with other senses. | | | | impact on Amy's mobility, potentially even on her |
| She doesn't know colours, so can't learn about the | | | | capacity to play the piano she loves so much. |
| world around her the way most of us do. Vision | | | | "Surgery would be very high risk," says Anne, "but |
| plays a crucial role in a child's psychological | | | | she is nearly adolescent now and together we will |
| development. | | | | work out decisions. We've made many for her |
| Perhaps that is why her astonishing gift of music is | | | | already, but now she's coming to an age where she |
| so vital, for this is a child Beethoven would | | | | herself will make those decisions. The specialists are |
| understand. His deafness, her blindness. They are | | | | very wary of subjecting her to any more surgery, |
| kindred spirits, and Beethoven too had small hands | | | | especially after the problems with her kidney - and |
| that could not span the eight notes of an octave. | | | | she will probably need to have another transplant |
| Amy can barely stretch four notes, but she has her | | | | later - but how do you balance up the risks of |
| own ways of compensating. | | | | surgery against the risk of being confined to a |
| Amy suffers from an extremely rare genetic | | | | wheelchair?" |
| condition, named after the two men who identified it. | | | | So the Moars live life to the full. The rare gene that |
| Saldino-Mainzer Syndrome has three components, | | | | means Amy's parents weren't prepared to take the |
| though few children have been unfortunate enough | | | | one in four risk of having another child with the same |
| to be struck by all three. Amy has. Her family have | | | | condition means that they are especially devoted to |
| not been able to find another family anywhere in the | | | | their remarkable daughter. |
| world with the same condition. As well as being blind | | | | "We don't look too much towards the long term," |
| and having the skeletal disorder which is causing her | | | | says Anne. "We live for the moment. |
| young spine to triple-curve, threatening her mobility, | | | | |