Matilda’s life­line

What the work of EACH, rais­ing £10m to build a new hos­pice called the nook, means to one Nor­folk fam­ily “As a fam­ily we would find it very dif­fi­cult pro­vid­ing the con­stant care Matilda needs with­out some sort of a break”

EDP Norfolk - - The Nook Appeal -

EAST ANGLIA’S Chil­dren’s Hos­pices (EACH) needs to raise £10 mil­lion through its nook ap­peal, to trans­form chil­dren’s pal­lia­tive care in Nor­folk.

One fam­ily who un­der­stand the dif­fer­ence that the nook will make are Bella and Matt Moxon and daugh­ters, Maisie, aged 15 and Matilda, aged 13. The whole Moxon fam­ily, who live in Plum­stead, have been us­ing ser­vices at the cur­rent EACH hos­pice at Quiden­ham since Matilda was four years old.

Matilda has mi­to­chon­drial cy­topa­thy com­plex one and four. This means that her body does not have the en­ergy re­quired to de­velop prop­erly so she re­quires 24 hour care to help with all her ev­ery­day needs. Matilda is un­able to talk, or walk, she is un­able to sup­port her own weight and can­not feed her­self. She also has daily seizures which are con­trolled with med­i­ca­tion.

Matilda goes to Quiden­ham for overnight short break care; her sis­ter Maisie at­tends sib­ling groups and the fam­ily at­tend EACH events and days out both at the hos­pice and in the com­mu­nity.

Bella Moxon, Matilda’s mum, ex­plained: “When we drop Matilda off for her stay we are con­fi­dent that she will be well cared for and thor­oughly en­joy her time there for her break.

“We have al­ways felt so re­laxed us­ing the ser­vices EACH pro­vides, even from our very first night when we all stayed to­gether as a fam­ily; it felt very much like stay­ing at some­one’s home – Maisie still talks about our first stay there fondly.

“Matilda’s stays at EACH are so im­por­tant to us as they en­able us to have time with Maisie where we can fo­cus on her and also some time to our­selves. As a fam­ily we would find it very dif­fi­cult pro­vid­ing the con­stant care Matilda needs with­out some sort of a break. Now she is older it be­comes in­creas­ingly dif­fi­cult to ask fam­ily mem­bers to help – EACH is a life­line to us. We also have the added sup­port of be­ing able to talk to any of the staff at EACH if we need to.”

The char­ity has out­grown its hos­pice at Quiden­ham which re­stricts the care they are able to of­fer to fam­i­lies. EACH has over £5.5 mil­lion to­wards a new pur­pose-built hos­pice for lo­cal fam­i­lies with chil­dren and young peo­ple with a life-threat­en­ing con­di­tion.

Jane Camp­bell, EACH ser­vice man­ager said: “At Quiden­ham we face con­straints ev­ery day. Due to lack of space, I have had to con­vert the nurses’ sta­tion to an of­fice for the physio and oc­cu­pa­tional ther­a­pist and am cur­rently plan­ning the con­ver­sion of one of the bed­rooms to an of­fice for the symp­tom man­age­ment team, a de­ci­sion I have not taken lightly but one that is re­quired to en­sure pro­fes­sional and con­fi­den­tial de­liv­ery of care. Un­til we have more room at the nook, I con­tinue to have to jug­gle rooms and de­cide what ser­vices we can of­fer.

“The new hos­pice is not sim­ply about in-house care or bed­rooms and play. We will be able to of­fer fam­i­lies im­proved fa­cil­i­ties in­clud­ing res­i­den­tial ac­com­mo­da­tion, con­fi­den­tial coun­selling rooms, a hy­drother­apy pool and large mu­sic and art stu­dios. It will also pro­vide us with the nec­es­sary hub for the de­liv­ery of ser­vices from a di­verse staff team. This in­cludes our in­creas­ingly pop­u­lar child sup­port, par­ents and be­reave­ment groups, which cur­rently take place off-site at a cost and with con­sid­er­able plan­ning.”Š

Matilda en­joys some sen­sory play­time

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