Three-year-old Aliyah has been coming to Richard House since she was 6 months old. Aliyah’s condition is currently undiagnosed, but she shows characteristics of cerebral palsy. Aliyah cannot walk or talk and has to use a feeding machine, which makes it hard for her in her day to day life. Here’s what mum Natasha had to say:

 “We heard about Richard House when Aliyah was about 6 months old. We weren’t very keen on visiting initially, simply because the name had “hospice” in it. However, over a weekend we gave it a go and it wasn’t as bad as we thought. We stayed in one of the flats upstairs at Richard House and continued to use it. I do find it very hard to leave her for respite stay at the hospice, so we do that occasionally but we have the option to use hospice at home and we use those services every week.

 The pandemic has been a really difficult time for us. It has been quite isolating and we have had to be extra cautious of many different factors now, which has really heightened the sense of paranoia. Shopping and getting food have been very difficult, I haven’t been able to do it as easily anymore. I don’t bring Aliyah to any shopping facility so I wait for either the Richard house nurse to come or if the shop has an option for delivery then I opt for that.

 Aliyah has recently started nursery but before that, her day to day life is spent with me. It was very isolating, especially during the pandemic. Since Aliyah has been in nursery however it’s been great for her, she gets the stimulation she needs to interact with other children. Before this it was very challenging as she can’t walk or talk, it makes it very hard for her to do a lot of stuff. This is very hard on me and especially my body, so Aliyah starting nursery has been great for both of us.

 Aliyah’s routine on a good day would start in the morning at 7.30am where she needs to be on her feeding machine for half an hour. We then give her a little rest to digest afterwards before we put her in the bath. After her bath she has a massage and some physio. She then has to do some standing frame work, she has to be in the standing frame twice a day for 30 minutes each. By this time, it’s 11am/11.30am and she has to go back on the machine, which is another 30 minutes. By then she often takes a nap but we also have to do some taster work; her speech and language therapist suggested we try to encourage her to try stuff in her mouth of a different texture. This can be quite challenging, as you have to be really patient as she doesn’t really open her mouth or like anything touching her lips. We then play with sensory toys and spend some time on the floor for tummy time. This is a just an example of a smooth day, Aliyah may be upset or tight that day which makes things a lot more challenging.

 The support from Hospice at Home has been great. She is in an environment that she is used to, so when the nurse comes I feel comfortable as they do everything I would do, just in her own environment. Although going to Richard House is great, I feel like I am abandoning her, whereas if she’s in my house and I am not here, I feel different. Having the hospice at home option has been so beneficial for us.

 The sensory room at Richard House is something Aliyah enjoys and it can really have a positive impact on her mood. If she is on the sensory water bed for example, it can really calm her down. The sensory bath can also set a good start for the day ahead, as it makes her relaxed if she is anxious or scared. 

 The care and support that Richard House provides really gives us the opportunity to get the respite we need. It allows me to go to Mums Group and pamper days, where we can interact with people that understand and can relate to what we are all going through. Without these generous donations we wouldn’t be able to do any of this. It provides a support system and brings us all together.”

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